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Orphan Drugs and Rare Diseases
18 October - 19 October 2017
Orphan Drugs and Rare Diseases

SAE Media Group is delighted to announce the return of their 7th annual Orphan Drugs and Rare Diseases conference to London on the 18th -19th October 2017!

 

With the global Orphan Drug market expected to grow to $127 billion by 2018*, and another Rare Disease Day just having passed, there is a constantly growing awareness and interest for this industry, enabling more research to make a difference in patients’ lives. SAE Media Group’s Orphan Drugs and Rare Diseases conference will once again bring together some of the leading senior industry professionals to network, learn, and discuss current issues in the rare disease industry.

 

Despite the recent growth in the orphan drug market, the way to having orphan drugs approved is still long and includes many challenges to overcome, such as regulatory and sustainability. The 7th annual Orphan Drugs and Rare Diseases conference will help connect industry professionals internationally, ensuring there is a great networking and learning opportunity to share knowledge of research, developments and issues. With topics being discussed such as Cell and Gene Therapy; Patient Recruitment and Patient-centric Research; Clinical Development, Regulatory Guidelines; Strategic Partnerships; Pricing and Reimbursement; and many more, this year's conference promises to be the perfect platform to exchange knowledge and network with your peers!

 

*Source: http://bit.ly/2mJZLJa

FEATURED SPEAKERS

Kei  Kishimoto

Kei Kishimoto

Chief Scientific Officer, Selecta Biosciences
Nadia Assenova

Nadia Assenova

Senior Director Regulatory Affairs, EMEA, Alexion Pharma GmbH
Richard Pye

Richard Pye

Senior Director, Corporate Affairs, Summit Therapeutics
Stuart Hughes

Stuart Hughes

Director, Head of Pharmacology, Vertex Pharmaceuticals

Aaron Barzey

CEO, ADB Medical
Aaron Barzey

Angela Stringer

Advocate & DMD Registry Curator, Action Duchenne
Angela  Stringer

I am a patient advocate for Action Duchenne and curator of the UK Duchenne Muscular Dystrophy Registry.

I had never heard of Duchenne Muscular Dystrophy until my son was diagnosed at the age of 3. At that time I felt compelled to engage with organisations to help my family and became a trustee for the Duchenne Family Support Group. As advocate and curator I speak, on a daily basis, to families affected by Duchenne and all stakeholders in the R&D arena. I am also a graduate of EUPATI (European Patients Academy for Therapeutic Innovation), gaining extra skills as an ‘expert patient’.

Carina Schey

Researcher, University Of Groningen
Carina  Schey

Carina Schey has many years of both pharmaceutical industry and clinical pharmacy experience. She is a consultant health economist based in Switzerland, also currently pursuing research through the University of Groningen, PharmacoEconomics and PharmacoEpidemiology Unit in the Netherlands. The primary focus of her research is developing ways of demonstrating the true value of orphan drugs, as alternative options to standard cost-effectiveness studies.
Carina was a clinical pharmacist with a special interest in rare diseases, having worked at several leading London hospitals. Between 2002 and 2008, Carina designed and implemented patient-focused homecare services on behalf of the UK NHS to patients with rare diseases.
Carina has published several peer-reviewed articles and abstracts. Notable speaking engagements include the European Parliament “Patients’ Rights Day” and “The Chronic Diseases” conference, both in 2015.
Carina sits on the expert judges’ panel for the MassChallenge and on the scientific advisory panels for several charities.
 

Carina Schey

Researcher, University Of Groningen
Carina  Schey

Diego Ardigo

Project Leader, Chiesi Farmaceutici S.p.A.
Diego Ardigo

Dr. Ardigò is an MD (specialized in Internal Medicine) and obtained a PhD at the University of Parma (Italy) and a post-doctoral fellowship at Stanford University (California, US). He is author of more than 40 indexed papers. He joined Chiesi in 2010, where acted as Clinical Lead in the registration of the first stem cell therapy in EU and led the cross-company team (with uniQure BV) treating the first patient with a commercial gene therapy in EU. He is chairman of the Therapies Scientific Committee of IRDiRC (International Rare Diseases Research Consortium) and member of EBE-EFPIA ATMP Working Group.

Janet Tuberville-Greenley

Roald Dahl Rare Disease Transition Sister, Birmingham Children's Hospital
Janet Tuberville-Greenley

Rare Diseases Challenges and Opportunities Workshop Leader

Julie Vallortigara

Research Officer, Ataxia UK
Julie Vallortigara

Dr Julie Vallortigara has been working in Ataxia UK’s since November 2013. She has developed a good understanding on the best practice for evaluation of research projects and their ongoing monitoring and support. Dissemination of research information to people living with ataxia and to researchers and healthcare professionals has also been an important element of her role. Finally Dr Vallortigara has gained significant knowledge about the issues and the needs of people living with a rare and long-life condition such as ataxia, by her contribution to the services provided to patients such as the helpline, workshops, and local support groups.
 

Kay Parkinson

CEO, Cambridge Rare Disease Network (CRDN)
Kay Parkinson

Kay Parkinson was the mother of two children who were diagnosed with the ultra rare disease Alström Syndrome when they were aged 18 & 15, having had four previous mis-diagnosis. Both children died following heart and heart/kidney transplantations aged 25 and 29 respectively. They received little support or understanding of their rare condition.
Kay qualified as a lawyer in 1996 as a mature student, specialising in charity law. In 1998 she founded the charity Alström Syndrome UK (ASUK). Kay served as their founder/ CEO for 15 years. In 2007 she fought the DOH to gain funding from the NHS Highly Specialised Services for the charity, she held the only UK database on affected families which she had collected since 1998. Kay stepped down in 2013 after ASUK was awarded EURORDIS Patient Organisation of the Year, to start up Alström Europe (AS EU) charity, where she still serves as a Director. In 2015 Kay joined the steering group of Cambridge Rare Disease Network as she believes all rare diseases need to work together for better diagnosis, treatments, services and a much needed higher public profile.
From September 2015 Kay has formally set up and structured Cambridge Rare Disease Network (CRDN) as their CEO. She is enjoying the challenge of working with a novel multi-stakeholder organisation and hopes to form closer links between the Cambridge “Cluster”, the largest biotech’s in Europe, the Cambridge University and people affected by rare diseases. Kay was awarded the “Champion of Hope” award 2017 by Genetic Disorders UK for the setting up of Alstrom Syndrome Europe.

Kei Kishimoto

Chief Scientific Officer, Selecta Biosciences
Kei  Kishimoto

Dr. Kishimoto is the Chief Scientific Officer of Selecta Biosciences, a biotechnology company developing synthetic vaccines based on a novel self-assembling nanoparticle technology. Prior to joining Selecta, Dr. Kishimoto was Vice President of Research at Momenta Pharmaceuticals where he led multidisciplinary teams in inflammation, oncology, and cardiovascular disease. Previously he was Senior Director of Inflammation Research at Millennium Pharmaceuticals, where he provided the scientific leadership for four programs in clinical development, and an Associate Director of Immunology at Boehringer Ingelheim. Dr. Kishimoto received his doctoral degree in Immunology from Harvard University and his post-doctoral training at Stanford University.

Larissa Kerecuk

Rare Disease Lead, Consultant Paediatric Nephrologist, Birmingham Children's Hospital
Larissa Kerecuk

Dr Larissa Kerecuk is very proud to be the Rare Disease Lead at Birmingham Children’s Hospital where she is developing the first Children’s Rare Disease Centre in the UK. This centre will provide a better integrated holistic care for children, young people and families affected by rare diseases as well as increasing access to research and new treatments.
Larissa is the lead for the 100 000 Genome Project at Birmingham Children’s Hospital, the lead recruiter in the West Midlands, which will provide a diagnosis and personalised approach to many yet undiagnosed children.
As Consultant Paediatric Nephrologist, Larissa specialises in treating children with kidney diseases including those on dialysis, which requires a holistic approach. Larissa is also Renal Research and Transition Lead and places great importance in integrating care for all patients. Larissa is the founder and coordinator of the Autosomal Recessive Polycystic Kidney Disease Rare Disease Group in the UK and has established international collaborations with the US and Europe. Larissa also developed the Human Factors Course to improve patient safety. More recently Larissa has been appointed as the NIHR Clinical Specialty Lead for Paediatrics in the West Midlands and her vision is for research to become an integral part of everyday NHS care.

Mahir Karababa

International Regulatory Affair Manager, Santhera Pharmaceuticals
Mahir  Karababa

I'm International Regulatory Affairs Manager at Santhera Pharmaceuticals (Switzerland) ltd in Liestal. I do have over 9 years of experience in regulatory affairs. I joined Santhera in November 2016 in order to develop the regulatory strategy to register orphan medicinal products in countries outside EU and US. My experience in regulatory affairs is focused on rare disease and orphan products mainly in RoW countries. I received my PhD Diploma from Lausanne University (Switzerland) and I hold a Postgraduate Master in regulatory affairs for biopharmaceuticals from EUCRAF with a thesis entitled "Global Regulatory strategy regarding marketing Authorization taking into account the emerging markets".

Nadia Assenova

Senior Director Regulatory Affairs, EMEA, Alexion Pharma GmbH
Nadia Assenova

Nadia Assenova MPharm, MBA, MSc is Senior Director, Regulatory Affairs EMEA region, at Alexion in Zurich. She has over 15 years of experience in global regulatory affairs. She joined Alexion in 2015 focusing on the registration of Orphan Medical products across the globe. Throughout her career, Nadia has been directly involved in multiple regulatory submissions, most recently focusing on development of new indications in ultra-rare diseases and regulatroy strategy for the metabolic products within the Alexion pipeline. Nadia received her Pharmacy MSc degree from the University of Medicine in Sofia (Bulgaria). She also holds an MBA from the University of Strathclyde (UK) and M.Sc. in Health Policy from Imperial College London (UK).

Olaf Ritzeler

External Innovation Lead, Sanofi
Olaf Ritzeler

Dr. Olaf Ritzeler scouts and evaluates external R&D opportunities in Europe at all development stages with a therapeutic focus on rare diseases. He is working in a global, transversal team to which he brings his strong expertise on drug discovery and development. The research teams led by him have delivered one phase IIb-, two phase I-, five preclinical- and six lead candidates. His contribution to Sanofi’s drug-pipeline was awarded by the “Meilenstein Preis” and “Drug Hunter Award” for outstanding efforts and key contribution to drug innovation and approval.

Olivier Morand

Senior Director, Rare Disease Therapeutic Area, Idorsia Pharmaceuticals Ltd
Olivier Morand

Olivier Morand is currently the Senior Director, Rare Disease Therapeutic Area at Idorsia Pharmaceuticals. He was previously the Senior Director, Clinical Science Program Head, at Actelion Pharmaceuticals Ltd, Allschwil, Switzerland, where his focus was on new therapies for rare metabolic diseases. While at Actelion he was also leading the Life Cycle team that successfully ran the Zavesca® program for type 1 Gaucher disease and Niemann-Pick type C disease. Previously, he held research positions in Drug Discovery at Roche in Basel, Switzerland and at Merck & Co. in Rahway, NJ (USA). He developed his know-how in several academic institutions such as the University of Wisconsin, Madison, the Hadassah School of Medicine, Jerusalem, and the Mount Sinai School of Medicine, New York. He holds two PhDs in Biochemistry and Nutrition (University of Paris).

Peter MacLennan

COO, TCR Solutions
Peter MacLennan

Dr MacLennan has worked on Rare and Orphan Diseases throughout a 30-year career spanning academia, pharma, biotech and CROs.

With Dr Davy Yeung, he is co-founder of Tailored Clinical Research Solutions (www.tcr-solutions.com). Their objective was to build a new kind of CRO that places patients, and the hospital sites that treat them, at the very heart of the clinical trial process.

The TCRS approach is proving highly effective in Rare and Orphan Indications where the relationship between Patient, Investigative Site, CRO and Sponsor is especially critical.
 

Dr MacLennan’s presentation will offer further insight into achieving successful patient recruitment and quality project delivery in these challenging diseases.
 

Richard Harbottle

Group Leader, DNA Vector Research, German Cancer Research Centre (DKFZ)
Richard Harbottle

Dr Richard Harbottle undertook his PhD and post-doctoral training in a Gene Therapy lab at Imperial College London where he worked on developing non-viral methods for introducing DNA into cells. He is currently the Research Group Leader of the DNA Vector Laboratory at the German Cancer Research Centre (DKFZ) in Heidelberg. His lab is now focused on the generation and application of novel, next-generation DNA vectors for gene therapy and for the safe and persistent genetic modification of cells. These DNA vectors provide therapeutic transgene expression without the use of potentially toxic viral components or the risk of insertional mutagenesis.

Richard Pye

Senior Director, Corporate Affairs, Summit Therapeutics
Richard Pye

Dr Richard Pye joined Summit in 2004 as a Senior Scientist and was involved in the formative development of the Company including being involved in the discovery of ezutromid for the treatment of Duchenne muscular dystrophy. He subsequently moved into the corporate side of the business and currently has responsibility for corporate affairs, communications and investor relations. He has a broad range of experiences and skills having been involved in a various corporate development activities including raising equity financing from the capital markets and securing funding from not-for-profit organisations and Summit’s initial public offering on NASDAQ that completed in 2015. Richard holds a PhD in Organic Chemistry and prior to joining Summit was a Post-Doctoral Research Associate at The University of Oxford.

Rick Thompson

Head of Research, Findacure
Rick Thompson

Dr Rick Thompson joined Findacure in 2015, after completing his PhD in Evolutionary Biology at the University of Cambridge. As Head of Research, he is responsible for their scientific projects, with the aim of developing a socially financed drug repurposing programme – Findacure’s rare disease drug repurposing social impact bond (RDDR SIB). Rick has designed and completed a proof of concept study to demonstrate the feasibility of the RDDR SIB to the NHS, investors, industry, and patient groups. He also works to encourage industry engagement with rare disease patient groups, promoting an open and collaborative approach to rare disease research.

Sheela Upadhyaya

Associate Director Highly Specialised Technologies Program, National Institute for Health and Care Excellence
Sheela Upadhyaya

Sheela Upadhyaya is currently the Associate Director of the Highly Specialised Technology program at NICE and is responsible for running the program to evaluate medicines and technologies for rare and ultra-rare conditions for commissioning in the NHS.
Prior to joining NICE, she was a commissioner of rare and ultra-orphan disease services in NHS England, where she delivered many improvements to these services by collaborating with industry, clinicians and patient groups. During that time she successfully decommissioned failing services and seamlessly transferred the care of patients to better quality services.
As commissioner, she held responsibility for the genetics and metabolic portfolio leading nationally for lysosomal storage disorders. In this role, she delivered more efficient drug and homecare prices by running national tender exercises with the Department of Health, Commercial Medicines Unit. As a result of this, she was selected to sit on the Department of Health’s National Homecare Medicines Committee developing the national homecare standards. Sheela has a passion for partnership working and believes that collaboration across the sector is the key to delivering high quality outcomes for all stakeholders. She is an adviser for the James Lind Alliance, a program that facilities identifying priorities for research. Sheela strives to ensure patients with rare conditions secure excellent quality and good outcomes in an efficient effective environment.

Stuart Hughes

Director, Head of Pharmacology, Vertex Pharmaceuticals
Stuart Hughes

Stuart Hughes is Director and Head of Pharmacology at Vertex Pharmaceuticals Europe Ltd. Following the award of a PhD in Cellular and Molecular Neuroscience from Cardiff University in 1999 he spent several years as a postdoctoral scientist studying the mechanisms that underlie a host of physiological and pathological brain rhythms. In 2006 he was awarded a Wellcome Research Fellowship to continue this work and made important contributions to the understanding of the cellular events that lead to the slow waves of deep sleep as well as the neural mechanisms that shape the so-called alpha rhythm of relaxed wakefulness. In 2008, he took up a position as a group leader in CNS research at Eli Lilly and Company, pursuing a range of ion channel targets for treating a variety of neurological and psychiatric disorders. In 2013, he moved to Vertex Pharmaceuticals to lead the UK in vivo pharmacology group where his main areas of focus have been on orphan diseases, cancer and neurodegeneration.

Tim Guilliams

Founder & CEO, Healx
Tim Guilliams

Tim is a social entrepreneur passionate about delivering the next generation of therapeutics to rare disease patients in need. He is the Founder and Chief Executive of Healx and the Co-Founder and Chair of the Cambridge Rare Disease Network (CRDN), a charity aiming to foster dialogue and awareness around rare diseases in Cambridge, UK.

Prior to Healx and CRDN, Tim worked on University-Industry interactions in the area of Life Sciences for the UK Government Department for Business, Innovation and Skills (BIS). He obtained his PhD in the field of Biophysical Neuroscience at the University of Cambridge. He is also a Junior Associate Fellow of the Centre for Science and Policy (CSaP). Before moving to Cambridge, he obtained an MEng in Bio-Engineering from the University of Brussels (VUB).
 

sponsors

Conference agenda

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13:30

Registration & Coffee

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14:00

Opening Remarks

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14:10

Session 1 – Challenges faced by those affected by Rare Diseases

Larissa Kerecuk

Larissa Kerecuk, Rare Disease Lead, Consultant Paediatric Nephrologist, Birmingham Children's Hospital

Janet Tuberville-Greenley

Janet Tuberville-Greenley, Roald Dahl Rare Disease Transition Sister, Birmingham Children's Hospital

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14:50

Session 2 – New Therapeutic Opportunities

Larissa Kerecuk

Larissa Kerecuk, Rare Disease Lead, Consultant Paediatric Nephrologist, Birmingham Children's Hospital

Janet Tuberville-Greenley

Janet Tuberville-Greenley, Roald Dahl Rare Disease Transition Sister, Birmingham Children's Hospital

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15:30

Afternoon Tea

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16:00

Session 3 – Rare Disease Research

Larissa Kerecuk

Larissa Kerecuk, Rare Disease Lead, Consultant Paediatric Nephrologist, Birmingham Children's Hospital

Janet Tuberville-Greenley

Janet Tuberville-Greenley, Roald Dahl Rare Disease Transition Sister, Birmingham Children's Hospital

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16:40

Session 4 – Rare Disease Transition from Paediatric to Adult Care

Larissa Kerecuk

Larissa Kerecuk, Rare Disease Lead, Consultant Paediatric Nephrologist, Birmingham Children's Hospital

Janet Tuberville-Greenley

Janet Tuberville-Greenley, Roald Dahl Rare Disease Transition Sister, Birmingham Children's Hospital

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17:20

Closing Remarks

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17:30

Close of Workshop

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8:30

Registration & Coffee

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9:00

Chairman's Opening Remarks

Olivier Morand, Senior Director, Rare Disease Therapeutic Area, Idorsia Pharmaceuticals Ltd

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9:10

Case study: Lucerastat for Fabry Disease

  • Lucerastat as substrate reduction therapy for Fabry disease
  • Pivotal clinical study: putting the drug and the disease in context
  • One disease but different development paths
  • The role of patient groups
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    Olivier Morand, Senior Director, Rare Disease Therapeutic Area, Idorsia Pharmaceuticals Ltd

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    9:50

    Successful Patient Recruitment and Project Delivery in Rare Indications

    Peter MacLennan, COO, TCR Solutions

  • Rare indications offer a tough challenge when it comes to Patient

          Recruitment, Patient Retention and achieving Project Timelines

  • Experience shows that the best way to achieve success is by working closely with 

          the patients and the investigative sites

  • The approach must be tailored to the needs of each individual site and 

          sometimes, to each individual patient

  • Real-world case studies will be used to illustrate how these principles work in 

         practice

     

     

     

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    10:30

    Morning Coffee

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    11:00

    Highlighting Duchenne muscular dystrophy (‘DMD’)

    Richard Pye, Senior Director, Corporate Affairs, Summit Therapeutics

  • About DMD
  • Emerging treatment approaches
  • Disease modifying and symptomatic treatments
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    11:30

    Developing a state of art telemedicine rare disease service

    Kay Parkinson, CEO, Cambridge Rare Disease Network (CRDN)

  • Need for rare disease patients to have access to experts
  • Patients use technology, mobile phones, tablets, laptops
  • Travel can be costly and difficult
  • Home support is vital for complex, multi symptom diseases

     

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    12:00

    Novel Approaches for the Genetic Therapy of Rare Diseases

    Richard Harbottle, Group Leader, DNA Vector Research, German Cancer Research Centre (DKFZ)

  • Progress and Successes of Gene Therapy
  • Development of Next Generation Gene Therapy Vectors
  • Gene Therapy for Rare Disease
  • Alternatives to Viruses - Non-Viral DNA Vectors for Gene Therapy

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    12:30

    Networking Lunch

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    13:40

    Improving the efficacy and safety profile of biologic therapeutic candidates for orphan and rare diseases by addressing product immunogenicity

    Kei Kishimoto, Chief Scientific Officer, Selecta Biosciences

  • Immunogenicity is a common cause of treatment failure and hypersensitivity reactions with biologic therapies, particularly for enzyme therapies and gene therapies for orphan and rare diseases
  • We have developed technology to induce antigen-specific immune tolerance to biologic therapies
  • I will present case studies from our lead clinical program in severe refractory gout and preclinical program in gene therapy

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    14:10

    Developing new therapies for rare diseases: beyond CF

    Stuart Hughes, Director, Head of Pharmacology, Vertex Pharmaceuticals

  • What are the key attributes of cystic fibrosis (CF) that have contributed to a successful drug discovery story?
  • Which other diseases have attributes similar to CF and how can we most effectively deliver therapies for these diseases?
  • How should we tackle diseases where there are gaps in the understanding of causal human biology?
  • What other novel ways can we utilise to address rare diseases?

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    14:40

    Developing the 1st Rare Disease Centre for Children in the World

    Larissa Kerecuk, Rare Disease Lead, Consultant Paediatric Nephrologist, Birmingham Children's Hospital

  • Challenges of Rare Diseases faced by people affected by rare diseases & co-design of centre with children & families
  • 100K Genome
  • Research and collaboration vital for rare diseases progress
  • Patient History – A Patient Speaks

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    15:10

    Afternoon Tea

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    15:40

    Ataxia UK’s mission and engagement in clinical research on the ataxias

    Julie Vallortigara, Research Officer, Ataxia UK

  • Our research strategy and activities to promote and facilitate research
  • Identification of unmet medical needs and gaps in research
  • Patients voice in research and clinical trials 
  • Examples of partnerships

     

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    16:10

    Evaluating Ultra Orphan Drugs at NICE

    Sheela Upadhyaya, Associate Director Highly Specialised Technologies Program, National Institute for Health and Care Excellence

  • Learn about the new revised methods that NICE have produced to evaluate ultra-orphan drugs
  • What do companies need to present and how
  • The role of patient groups and how they support the process

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    16:40

    Chairman’s Closing Remarks and Close of Day One

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    8:30

    Registration & Coffee

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    9:00

    Chairman's Opening Remarks

    Larissa Kerecuk, Rare Disease Lead, Consultant Paediatric Nephrologist, Birmingham Children's Hospital

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    9:10

    Global Orphan Drug Regulatory Strategy

    Aaron Barzey

    Aaron Barzey, CEO, ADB Medical

  • Global orphan drug regulations
  • Joint FDA-EMA submissions
  • Impact of Brexit on the industry

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    9:50

    What does orphan drug designation bring in RoW countries?

    Mahir Karababa, International Regulatory Affair Manager, Santhera Pharmaceuticals

    • Orphan regulations worldwide
    • Incentives with Orphan designation
    • Orphan eligibility criteria and application procedure: some examples

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    10:20

    Morning Coffee

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    10:50

    Drug Repurposing for Rare Diseases

    Rick Thompson, Head of Research, Findacure

  • An introduction to drug repurposing in the rare disease space, and the novel techniques being used to identify repurposing opportunities
  • A summary of Findacure’s work in developing a new financial model to fund generic drug repurposing using social finance – the Rare Disease Drug Repurposing Social Impact Bond (RDDR SIB)
  • The RDDR SIB uses NHS savings to reimburse research costs, I will review our health economic research to prove the model’s viability
  • A summary of the results of our global open call for rare disease repurposing ideas
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    11:20

    Artificial Intelligence to Advance Rare Disease Treatments

    Tim Guilliams, Founder & CEO, Healx

  • Big data and artificial intelligence approaches in drug discovery
  • Data-driven drug repurposing to accelerate translation
  • Role of patient communities in translation
     

     

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    11:50

    Experience with an orphan product approved under exceptional circumstance

    Nadia Assenova, Senior Director Regulatory Affairs, EMEA, Alexion Pharma GmbH

  • Review of initial MAA timelines
  • Aspects of decision making on exceptional vs. conditional
  • Post-approval life cycle experience
  • Post-approval measures and specific obligations
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    12:20

    Networking Lunch

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    13:30

    Orphan Drug development and market sustainability: are we ready for a quantum leap?

    Diego Ardigo, Project Leader, Chiesi Farmaceutici S.p.A.

  • Critical analysis of the OD productivity and sustainability in the near future
  • Development and commercialisation elements that can drive the change and overcome the sustainability issues
  • The impact of one-off (cell & gene) therapies in the landscape of reimbursement of orphan drugs
  • Limitations and lessons learnt from the first one-off therapies approved in EU
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    14:00

    Patient's View of the Clinical Trial Process and Patient Registries

    Angela Stringer, Advocate & DMD Registry Curator, Action Duchenne

  • Clinical Trial Selection
  • Patient Perspective
  • The UK DMD Registry
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    14:30

    Afternoon Tea

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    15:00

    Challenges, Opportunities and Treatment of Rare Diseases

    Olaf Ritzeler, External Innovation Lead, Sanofi

  • Challenges of rare diseases
  • Decision matrix to choose a rare disease
  • How common disease can profit from work on rare monogentic disease

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    15:30

    Affordability and Sustainability Issues in Rare Diseases

    Carina Schey, Researcher, University Of Groningen

  • How to address issues of affordability
  • Understanding the long-term landscape in healthcare reimbursement
  • Ensuring for sustainability of access to innovative orphan drug treatments
     

     

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    16:00

    Chairman’s Closing Remarks and Close of Day Two


    CEO
    ADB Medical
    Advocate & DMD Registry Curator
    Action Duchenne
    Researcher
    University Of Groningen
    Researcher
    University Of Groningen
    Project Leader
    Chiesi Farmaceutici S.p.A.
    Roald Dahl Rare Disease Transition Sister
    Birmingham Children's Hospital
    Research Officer
    Ataxia UK
    CEO
    Cambridge Rare Disease Network (CRDN)
    Chief Scientific Officer
    Selecta Biosciences
    Rare Disease Lead, Consultant Paediatric Nephrologist
    Birmingham Children's Hospital
    International Regulatory Affair Manager
    Santhera Pharmaceuticals
    Senior Director Regulatory Affairs, EMEA
    Alexion Pharma GmbH
    External Innovation Lead
    Sanofi
    Senior Director, Rare Disease Therapeutic Area
    Idorsia Pharmaceuticals Ltd
    COO
    TCR Solutions
    Group Leader, DNA Vector Research
    German Cancer Research Centre (DKFZ)
    Senior Director, Corporate Affairs
    Summit Therapeutics
    Head of Research
    Findacure
    Associate Director Highly Specialised Technologies Program
    National Institute for Health and Care Excellence
    Director, Head of Pharmacology
    Vertex Pharmaceuticals
    Founder & CEO
    Healx

    Sponsors and Exhibitors

    Official Media Partner

    Official Publication

    Supporters

    Workshops

    Rare Diseases Challenges and Opportunities

    Rare Diseases Challenges and Opportunities

    Holiday Inn Kensington Forum
    17 October 2017
    London, United Kingdom

    Orphan Drugs and Rare Diseases Preliminary Attendee 2017 List

    Download

    Meeting the increasing demands for innovative treatments with the University of Groningen

    Download

    ATAXIA UK: SUPPORTING THE CAUSE UNTIL THERE'S A CURE

    Download

    RARE INSPIRATION FROM BIRMINGHAM CHILDREN’S HOSPITAL Q&A WITH LARISSA KERECUK

    Download

    INTERVIEW: The future of Rare Diseases with Kay Parkinson, CEO, Cambridge Rare Disease Network

    Download

    Sponsors and Exhibitors


    myTomorrows

    Sponsors and Exhibitors
    http://www.mytomorrows.com

    At myTomorrows, we believe everyone should have access to all suitable treatment options. Working together with medicine manufacturers to develop and execute strategies for Early Access, we strive to make it easier for physicians and patients with unmet medical needs to find, get information about, and access pre-approval medicines.


    Tailored Clinical Research Solutions

    Sponsors and Exhibitors
    http://www.tcr-solutions.com

    Rare and Orphan indications require a clinical CRO with a meticulous and dedicated approach. Tailored Clinical Research Solutions meets this challenge by delivering a highly personalized service that is very different to the larger “corporate” CROs.

    Whether you are seeking full support for every aspect of your clinical development programme or just for one part of a study, TCRS offers flexibility, momentum and value.


    Media Partners


    Personalize My Medicine

    Official Media Partner
    http://www.personalizemymedicine.com/

    Personalize My Medicine (PMM) places people and patients at center by informing them of the latest advances in medical innovation relevant to their condition and promoting research and innovation for unmet medical needs through our dedicated crowdfunding platform designed for both patients and innovators. PMM researches, informs, and facilitates advancements in healthcare for anyone who wants to be more proactive about their own health by conducting surveys, setting up research networks, crowdfunding for medical innovation, and promoting medical innovation for orphan diseases. Please be invited to www.personalizemymedicine.com to find out more. https://www.youtube.com/watch?v=ZllKlRuG2EQ&app=desktop


    Check Orphan

    Official Media Partner
    http://www.checkorphan.org

    CheckOrphan leading news and information source for rare diseases and orphan products. CheckOrphan database of Access Programs, essential for helping patients gain access to much needed treatments. Sign up for your free daily newsletter and stay informed. Follow us on Twitter, Facebook, Blog, YouTube, LinkedIn, and Google+


    SCIAD

    Official Media Partner
    http://http://www.sciad.com

    SCIAD is a marketing and communications agency working with businesses in science, tech, healthcare, and biotech. We integrate Brand, Digital and PR to drive up reputations and increase website traffic, connecting with key audiences to drive business development and build your reputation. Contact us at info@sciad.com.

    Media Partners


    International Journal of Behavioural and Healthcare Research

    Official Publication
    http://www.inderscience.com/ijbhr

    IJBHR addresses a broad range of original experimental and theoretical papers that deal with behavioural and healthcare concerns. It welcomes high-quality papers from scientists in academic and non-academic organisations as well as business and government worldwide. IJBHR is sponsored by the Business and Economics Society International and the Frontiers in Immunology Research Network.


    International Journal of Computational Biology and Drug Design

    Official Publication
    http://www.inderscience.com/ijcbdd

    IJCBDD, an International Society of Intelligent Biological Medicine official journal, bridges the gap between two very important, complementary disciplines, computational biology and drug design. Through advances in high-throughput genome sequencing and digital imaging technologies, biocomputing, drug design and medical research have unfolded new, predictive sciences such as genomics, proteomics, lipidomics, metabolomics, cytomics and pharmaconomics. These promote new computational, statistical and biomedical approaches to drug design/development, besides unleashing the potential of significantly more accurate, effective personalised diagnosis, therapeutics and patient care.


    Int. J. of Immunological Studies

    Official Publication
    http://www.inderscience.com/ijis

    IJIS publishes a broad range of papers on all aspects of immunology from scientists in academic and non-academic organisations as well as business and government worldwide. IJIS is the flagship journal of the Frontiers in Immunology Research Network.


    International Journal of Medical Engineering and Informatics

    Official Publication
    http://www.inderscience.com/ijmei

    IJMEI promotes an understanding of the structural/functional aspects of disease mechanisms and the application of technology towards the treatment/management of such diseases. It seeks to promote interdisciplinary collaboration between those interested in the theoretical and clinical aspects of medicine and to foster the application of computers and mathematics to problems arising from medical sciences. IJMEI includes authoritative review papers, the reporting of original research, and evaluation reports of new/existing techniques and devices. Each issue also contains a comprehensive information service.


    International Journal of Cognitive Biometrics

    Official Publication
    http://www.inderscience.com/ijcb

    Cognitive biometrics acquires information from users through collection of one or more biosignals. This relies on the presentation of one or more external or imagined stimuli. The subsequent response(s) are acquired and used for verification and authentication. IJCB addresses all aspects of cognitive biometrics, which aims to extract a unique signature from the user based on the cognitive, affective and conative state of the individual, either alone or more typically in various multi-modal combinations involving conventional and soft biometrics.

    Media Partners


    RareBase

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    The RareBase Networking Portal links people and companies throughout the world with an interest in rare and paediatric diseases.


    ASD MEDIA

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    http://www.asd-network.com

    Professionals in the Aerospace & Defence market use the ASD Media internet platforms to:
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    The ASD Media platforms are well known and used intensively, your company is able to benefit from these large numbers of users. Be informed with ASD-Network; Create exposure for your company with ASDSource, distribute your news with ASDWire or advertise with us, build your brand and increase traffic to your company’s website.

    For more detailed information please contact with: ASD MEDIA
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    pharmaphorum

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    pharmaphorum drives innovation within the pharmaceutical industry, by bringing healthcare together through a suite of media services that help produce and disseminate thought leadership, combined with an online platform for communicating messages to a global audience.Visit www.pharmaphorum.com


    PMR

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    PMR (www.pmrcorporate.com) is a British-American company providing market information, advice and services to international businesses interested in Central and Eastern European countries as well as other emerging markets. PMR's key areas of operation include business publications (through PMR Publications), consultancy (through PMR Consulting) and market research (through PMR Research ). Being present on the market since 1995, offering high international standards in projects and publications, as well as providing one of the most frequently visited and top-ranked websites, PMR is one of the largest companies of its type in the region.


    Mednous

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    MedNous is a print publication and website about medical innovation in Europe. It carries exclusive interviews with companies that are at the forefront of medical technology, as well as contributor articles from prominent practitioners. Our mission is to identify significant advances in medicine and to explain how this innovation is being commercialised. In doing so, we talk to venture capitalists about what products and platforms they are supporting. We report on how regulators cope with the accelerating pace of innovation. And we regularly cover the latest developments in the discovery and development of new medical concepts in the area of antibodies, vaccines, small molecules, regenerative medicine and nanomedicines. MedNous combines the English word for medicine with the Greek word for intellect. And those with nous are readers of our publication. Visit our website: www.mednous.com


    Drug Development Technology

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    Drugdevelopment-technology.com covers every aspect of the drug development and research process, from conception to pre-FDA approval. Our global network of journalists updates the site with the latest and most significant industry developments. This coverage allows us to provide everyone - from senior management through to research and QA staff – with in-depth reviews of the latest projects, advance notice of new product releases and analysis of the latest procedural and legislative developments.


    CLocate

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    http://www.clocate.com

    Clocate.com is a leading international directory for worldwide conferences and exhibitions. Clocate.com is equipped with a unique and comprehensive search that helps you find easily any event in any category or location. Each event includes detailed information, like, description, dates, location, map, prices, link to the official event's website and more...


    European Biopharmaceutical Review

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    http://www.samedanltd.com/magazine/12

    European Biopharmaceutical Review (EBR) is a magazine dedicated to the biopharmaceutical and biotech industries. Each quarterly edition features articles from key opinion leaders on research, drug discovery and development, biomanufacturing, outsourcing and more on the science and business of the sectors. EBR also features insightful interviews, reviews and event information to form a strong B2B platform. Read EBR in print, online, or via the Samedan app.


    Pharmiweb

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    http://www.pharmiweb.com

    Established in October 2003, PharmiWeb Solutions is an energetic, innovative provider of web-based solutions for the pharmaceutical sector, with customers such as AstraZeneca, Roche, Servier Laboratories, and Merck With solutions in three key areas: Online Publishing, e-Business and Mobile Computing, we deliver connectivity – between people and applications – unlocking islands of data and knowledge. We own some of the sector’s most innovative Online Publications: PharmiWeb.com, HospitalPharma.com and Detail-Direct.com. We are actively developing solutions for Mobile Computing platforms. For example, our PharmiTabTM e-pharmacy solution runs real-time patient data and prescribing transactions in a busy hospital environment, on a TabletPC, wireless client/server platform. e-Business solutions range from e-Detailing, to Online Market Research, all designed to increase reach, increase sales, and to reduce administration and costs.


    Labsave

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    Labsave is the leading savings website for Laboratory Equipment and Lab Supplies. We work closely with the top suppliers in the world to bring you the best products at the most competitive prices. We are constantly striving to secure the biggest and most exclusive offers that you won’t find anywhere else! http://www.labsave.com/


    EIN Presswire

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    EIN Presswire has a distribution "foot-print" that includes millions of users of our EIN Newsdesk media monitoring services. We also maintain one of the world's leading media directories providing us with up-to-date contacts for media in every country and U.S. state. Further distribution is achieved via RSS, email, partner websites, and social media. We are both a destination (EIN Newsdesk) and a distributor (EIN Presswire) for news. In one place you can distribute your news to the targeted audiences you select and monitor news on that topic published by thousands of worldwide sources. For more information or to try us FREE, please visit www.einpresswire.com/free


    Contract Biotechnology

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    http://www.contract-biotechnology.com

    Contract-Biotechnology.com is a web-based platform for laboratory outsourcing solutions. It is an online R&D matching tool that connects Scientifics and service and product providers worldwide. The platform Contract-Biotechnology.com would help you in the process of finding the right partner saving time and money, because with one single and secure application you would be able to receive multiple quotes quickly, keeping your contact information confidential. Contract-Biotechnology.com is the new Collaboration Network Model for Discovery Research and Development. Contract-Biotechnology.com team has extensive experience working for pharmaceuticals, biotechs, universities and academic research institutes and can help you addressing your key gaps.


    Gate2Biotech

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    http://www.gate2biotech.com

    Gate2Biotech is a portal that unites biotechnological community in Central Europe. It covers all the news in the field of biotechnology. Thanks to the the portal the companies engaged in the field can easily search for research institutions and other partners to solve technical problems they are facing and here they can also present their services offer to potential partners from the Czech Republic and abroad. Gate2Biotech portal serves as a bridge connecting scientific and commercial sector. It incorporates offices and support organizations dedicated to promoting transfer of innovative technologies into a unified communication platform of Czech and international biotechnologies. As a mediator of information it draws attention to biotechnologies and support of their application and transfer into practice. It also functions as a tool for encouraging non-professionals (especially scientists and students) towards innovative business or applied research.


    One Nucleus

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    http://www.onenucleus.com

    Established in May 2010, One Nucleus is the result of the merger of ERBI and London Biotechnology Network. One Nucleus is a not-for-profit membership organisation for international life science and healthcare companies and the largest of its kind in Europe. The company is based in Cambridge UK and London, at the heart of Europe's largest cluster. The 470 members include pharmaceutical, biotech, medical device and diagnostic companies and associated technical and commercial Service Providers.


    Pharmacircle

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    http://www.pharmacircle.com

    PharmaCircle is an innovative knowledge management company serving the current and future global leaders in the Pharmaceutical and Biotechnology related industries. PharmaCircle is a one stop information and analysis source for pipeline, products, clinical trials, drug delivery technologies, deals and acquisitions, company financials, venture capital investments, product sales, pharmaceutical services, news, patents and more….


    BioChem Adda

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    https://www.biochemadda.com/

    BioChem Adda is a Not-just-for-Profit organization which aims to bring out the most reliable and transparent information about everything related to jobs, careers, education, news, articles, and events from the field of BioSciences and Chemistry!


    European Biotechnology Network

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    http://european-biotechnology.net/

    The European Biotechnology Network is dedicated to facilitating co-operation between professionals in biotechnology and the life sciences all over Europe. The non-profit organisation brings research groups, universities, SMEs, large companies and indeed all actors in biotechnology together to build and deliver partnerships.


    SciDoc Publishers

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    http://www.scidoc.org

    SciDoc Publishers is a major source provider of e-journals in the field of Science, Technology and Medicine (STM). The nature of journals - Open Access and Peer-reviewed. We are aimed with a sole motive in making a mark in the field of Open Access, by propagating the knowledge to the scientific community. Our prime concern involves, the knowledge to reach millions of readers and give them access to scientific publications - online.


    Labiotech.eu

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    Labiotech.eu is the leading digital media covering the European Biotech industry. Over 100,000 monthly visitors use it to keep an eye on the business and innovations in biotechnology. Hope you'll enjoy reading our stories!


    Pharmaceutical Technology

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    http://www.pharmaceutical-technology.com

    Pharmaceutical-technology.com is the only website focusing specifically on issues relevant to pharmaceutical professionals working with technology, be it development, engineering, IT or production. Pharmaceutical-technology.com brings you the latest in industry projects and updates, along with the news, views and trends that leading professionals – from senior executives to manufacturing managers and heads of procurement – require to stay on top of their field.


    Samedan

    Supporters
    http://www.samedanltd.com/magazine/13.

    International Clinical Trials (ICT) is a quarterly magazine edited by Dr Graham Hughes, and written by specialists at the forefront of clinical research. ICT’s coverage of operational developments ranges from adaptive designs in early phase trials through to post marketing research. ICT’s targeted readership consists of key decision makers across the pharmaceutical and biotech industries, along with contract partners and consultants. The magazine is distributed to pharmaceutical professionals in Europe and North America, and is accessed globally online. Read the latest issues, explore the ICT archive and subscribe at www.samedanltd.com/magazine/13.


    Select Science

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    http://www.selectscience.net/

    SelectScience is an independent, online information resource for the worldwide scientific community, and the home of trusted information for laboratory scientists. Discover impartial, expert opinion and trusted reviews about latest laboratory equipment and techniques; plus videos, application notes and science news from around the world. Become a member for free today.


    Farmavita

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    https://farmavitar.com

    FarmavitaR+ is the professional network of experts and service providers. Network is gathering local consultants from 90 countries in Europe, Asia, North America, Latin America, Australia and Africa. Management of international, multi-centre projects is our core competence. FarmavitaR+ is providing solutions related to pharmaceutical, medical device, food supplement and cosmetic products. Scope of services is related to solutions for product development, quality assurance, clinical trials, product registration, portfolio analysis, lifecycle management, vigilance/risk management, pricing/reimbursing, market access and promotional compliance. FarmavitaR+ is brand name of Farmavita Regulanet Ltd. Visit https://farmavitar.com for more information. Outsource anything you can think of!


    Drug Discovery Today

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    http://www.drugdiscoverytoday.com/

    Drug Discovery Today covers the whole of the preclinical drug discovery process. The reviews are cutting edge, written by experts in their respective fields and cover all aspects of drug discovery from genomic and proteomic approaches, computational drug design, medicinal chemistry and the translation of these sciences to therapies.


    Pharmalicensing

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    http://www.pharmalicensing.com

    Pharmalicensing (www.pharmalicensing.com) is the premier biopharmaceutical Open Innovation resource designed for professionals involved with partnering, licensing and business development worldwide. Actively supporting all forms of partnering and in- and out-licensing activities, Pharmalicensing utilizes the unique online Showcase Profiling & Discover services, as well as its renowned Partnering Search service leveraging its global network of industry experts, to enable companies to identify and engage with appropriate partners around the world. Pharmalicensing is actively utilized by many tens of thousands of industry professionals each month. Pharmalicensing is a division of Cognis Group, Inc.


    Technology Networks

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    http://go.technologynetworks.com/subscribe-to-newsletters

    Founded in 2000, Technology Networks is established as the leading news provider for life science and drug discovery professionals. In addition, we provide unique content including webcasts, videos, application notes and posters from recent conferences. Our portfolio now includes around 30 focussed scientific communities, all of which are accessible free of charge within TechnologyNetworks.com


    Drug Target Review

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    http://www.drugtargetreview.com

    Drug Target Review’s quarterly magazine, website and annual events program provides high quality content with peer-written articles that are submitted exclusively by the world’s most respected scientists in their field. This attracts a committed base of readers, users and delegates made up of senior decision-makers from the life science and drug discovery industries at the top pharmaceutical companies, as well as academics and scientists from the top research institutes across the globe.


    International Pharmaceutical Industry

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    http://www.ipimediaworld.com

    IPI gives you an insight into all areas of Biopharm, Medical, Pharmaceutical and Healthcare. IPI provides a proven supportive means of communication to the Pharmaceutical, Bio Pharmaceutical, Nutraceutical and Medical Devices industry, incorporating the latest in research and technology innovations, regulatory guidelines, marketing and communication strategies.


    BioPharm Insight

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    http://www.biopharminsight.com

    BioPharm Insight is your definitive guide to the global life sciences community. Subscribers take action on forward-looking intelligence uncovered by an independent team of investigative journalists, and make strategic business decisions using the most comprehensive and powerful real-time database of market analytics and key contacts. Featuring an intuitive online interface and exclusive Active IntelT relational content technology, BioPharm Insight provides an unrivaled capability to segment and analyze the industry with detailed and searchable profiles.


    Biosave

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    http://www.Biosave.com

    Biosave.com brings together the best Life Science promotions, product releases, featured products, publications, videos and events from 100’s of leading Life Science suppliers. Updated 24 hours a day, Biosave is constantly uploading special promotions and exciting product news that you won’t find anywhere else. Our goal is to provide our users with the most exclusive product information to help reach that all important purchasing decision.


    Pharmavision

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    http://www.pharmavision.co.uk

    PharmaVision offers a consultancy service providing independent pharmaceutical thematic research to the healthcare industry, the investment community and competitive intelligence specialists. We perform due diligence research and provide expert commentary in healthcare. Our reports combine scientific analysis in drug delivery, R&D technologies and pharmaceutical products including patient modelling, product/technology forecasts and market trends evaluation.


    Absave

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    http://www.absave.com

    Absave.com is the leading savings website for Antibodies and Immunological Products. Search our extensive database of Antibodies, Kits, Proteins & Peptides, Reagents, etc. to find the best savings!


    Swiss Biotech Association

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    http://www.swissbiotech.org/

    The Swiss Biotech Association (SBA) is the national industry association for biotechnology, including pharmaceuticals, diagnostics, agriculture, food, cosmetics, environmental biotechnology, and specialty chemicals. Members are companies active in modern biotechnology, such as R&D, Production, Marketing and Sales, Finance, Services and Consulting. SBA provides a networking platform for Life Science clusters, academic and federal institutions the like. Founded in March 1998, the Association grows steadily.


    Copybook - Pharmaceutical

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    http://www.copybook.com/pharmaceutical

    Copybook is a global business network with many pharmaceutical events, exhibitions and seminars. We encourage business-to-business transactions and work tirelessly to gain our customers new business contracts worldwide. You can add events, companies and associations for free. When you are a member, you can add your company to the events listed in order to encourage other visitors to arrange meetings and appointments at those events to facilitate new business contracts. Want to see how we can increase your business network and transactions? SIGN UP FOR FREE today! Copybook – Your Global Business Network


    Biocompare

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    http://www.biocompare.com

    Biocompare.com is the leading resource for up-to-date product information, product reviews, and new technologies for life scientists. Biocompare combines an in-depth knowledge of life science products and new technologies with the power of the Internet to offer scientists the most dynamic, relevant, and innovative media-based marketplace for life science information.


    GBI

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    http://www.gbihealth.com/

    GBI is an information, applications, and services company focused on the healthcare industry. Leveraging data from across the healthcare value chain, GBI creates web and mobile applications that enable individuals and organizations to make better decisions and communicate more effectively.


    CanBiotech

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    http://www.canbiotech.com

    CanBiotech - A Portal and B2B Outsourcing Marketplace for the Biotech and Pharmaceutical Industry. The Marketplace features the Outsourcing Services Showcase; the Portal features our biopharmaceutical and venture capital directories and databases. Publications include the BioMedical Outsourcing Report and the Bio Outsourcing Asia© Publication.


    Bentham Science

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    http://www.benthamscience.com/

    Bentham Science Publishers is a major STM journal publisher of 130 plus print and online journal. Out of these, 40 journals have already registered good IMPACT FACTORS as per Journal Citation Reports® 2017. These titles have extensive readership mostly in Europe and North America. For a detailed profile please visit our website at http://www.benthamscience.com. Besides, Bentham Science publishes eBooks in all areas of Science, Technology and Medicine. Our eBooks provide professionals, academicians, corporate researchers, graduates and undergraduates worldwide with the most current information in their subject areas of interest. Our eBooks are also available in the ePub and Kindle formats besides the PDF edition here http://ebooks.benthamscience.com/. Bentham is offering attendees of this conference discounts on its publication. For more information click here

    Holiday Inn Kensington Forum

    97 Cromwell Road
    London SW7 4DN
    United Kingdom

    Holiday Inn Kensington Forum

    Holiday Inn Kensington Forum is perfectly situated in one of London’s most luxurious and beautiful areas within South Kensington. 

    The hotel is just 2 minutes walk from Gloucester Road tube station for convenient travel to Hyde Park, London Eye, Tower Bridge plus more of London’s top attractions. There are also easy and direct links to some major transport hubs including Victoria, Kings Cross St Pancras, Paddington and Heathrow. 

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    WHAT IS CPD?

    CPD stands for Continuing Professional Development’. It is essentially a philosophy, which maintains that in order to be effective, learning should be organised and structured. The most common definition is:

    ‘A commitment to structured skills and knowledge enhancement for Personal or Professional competence’

    CPD is a common requirement of individual membership with professional bodies and Institutes. Increasingly, employers also expect their staff to undertake regular CPD activities.

    Undertaken over a period of time, CPD ensures that educational qualifications do not become obsolete, and allows for best practice and professional standards to be upheld.

    CPD can be undertaken through a variety of learning activities including instructor led training courses, seminars and conferences, e:learning modules or structured reading.

    CPD AND PROFESSIONAL INSTITUTES

    There are approximately 470 institutes in the UK across all industry sectors, with a collective membership of circa 4 million professionals, and they all expect their members to undertake CPD.

    For some institutes undertaking CPD is mandatory e.g. accountancy and law, and linked to a licence to practice, for others it’s obligatory. By ensuring that their members undertake CPD, the professional bodies seek to ensure that professional standards, legislative awareness and ethical practices are maintained.

    CPD Schemes often run over the period of a year and the institutes generally provide online tools for their members to record and reflect on their CPD activities.

    TYPICAL CPD SCHEMES AND RECORDING OF CPD (CPD points and hours)

    Professional bodies and Institutes CPD schemes are either structured as ‘Input’ or ‘Output’ based.

    ‘Input’ based schemes list a precise number of CPD hours that individuals must achieve within a given time period. These schemes can also use different ‘currencies’ such as points, merits, units or credits, where an individual must accumulate the number required. These currencies are usually based on time i.e. 1 CPD point = 1 hour of learning.

    ‘Output’ based schemes are learner centred. They require individuals to set learning goals that align to professional competencies, or personal development objectives. These schemes also list different ways to achieve the learning goals e.g. training courses, seminars or e:learning, which enables an individual to complete their CPD through their preferred mode of learning.

    The majority of Input and Output based schemes actively encourage individuals to seek appropriate CPD activities independently.

    As a formal provider of CPD certified activities, SAE Media Group can provide an indication of the learning benefit gained and the typical completion. However, it is ultimately the responsibility of the delegate to evaluate their learning, and record it correctly in line with their professional body’s or employers requirements.

    GLOBAL CPD

    Increasingly, international and emerging markets are ‘professionalising’ their workforces and looking to the UK to benchmark educational standards. The undertaking of CPD is now increasingly expected of any individual employed within today’s global marketplace.

    CPD Certificates

    We can provide a certificate for all our accredited events. To request a CPD certificate for a conference , workshop, master classes you have attended please email events@saemediagroup.com

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