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Edinburgh International Conference Centre

May 26, 2016 8:00 AM - May 28, 2016 5:30 PM

The Exchange , Edinburgh EH3 8EE , Scotland , UNITED KINGDOM

8th European Conference on Rare Diseases & Orphan Products

Overview

8th European Conference on Rare Diseases & Orphan Products

Game Changers in Rare Diseases:
Delivering 21st century healthcare to rare disease patients: Together we can change the future!

This biennial conference is the unique forum across all rare diseases, across all European countries, bringing together all stakeholders:

  • Patient representatives
  • Healthcare professionals 
  • Academics 
  • Industry
  • Policy makers
  • Regulators
  • Payers

Have a look at the Programme here.

 WHAT IS ECRD?

  • The European Conference on Rare Diseases & Orphan Products is the unique platform/forum across all rare diseases, across all European countries, bringing together all stakeholders - patients’ representatives, academics, researchers, health care professionals, industry, payers, regulators and policy makers.
  • ECRD provides the state-of-the-art of the rare disease environment, monitoring and benchmarking initiatives.
  • ECRD covers research, development of new treatments, health care, social care, information, public health and support at European, national, regional and international levels.

For more details please visit www.rare-diseases.eu

 

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Continuing-Education

Exhibits

Short Course or Primer

To keep you at the forefront.

May 26, 2016

TUTORIAL 01:

EMA REGULATORY ROUTES SUPPORTING ORPHAN DRUG DEVELOPMENT

May 26, 2016

TUTORIAL 02:

HEALTH TECHNOLOGY ASSESSMENT (HTA) - HOW TO PREPARE AND ENGAGE EARLY FOR RARE DISEASES

May 26, 2016

TUTORIAL 03:

HOW COULD THE RD-CONNECT PLATFORM SUPPORT RARE DISEASE EUROPEAN REFERENCE NETWORKS?

Program Committee

  • Wills  Hughes-Wilson
    Wills Hughes-Wilson Senior Vice President Patient Access & External Affairs, Chief Patient Access Of
    Swedish Orphan Biovitrum AB, Sweden
  • Alastair  Kent, MHS
    Alastair Kent, MHS Co-Chair of the UK Rare Disease Policy Board; Former Executive Director
    Genetic Alliance UK, United Kingdom
  • Bruno  Sepodes, PharmD, PhD, MPH, MSc
    Bruno Sepodes, PharmD, PhD, MPH, MSc Vice-Chair CHMP (EMA); Senior Expert INFARMED
    INFARMED, Portugal
  • Christian  Cottet
    Christian Cottet Chief Executive Officer
    AFM - Assoc. Française Contre Les Myopathies, France
  • Dorica  Dan
    Dorica Dan President
    Romanian National Alliance for Rare Diseases, Romania
  • Pascal  Garel
    Pascal Garel Chief Execuitve
    HOPE - European Hospital and Healthcare Federation, Belgium
  • Adam  Heathfield, PhD
    Adam Heathfield, PhD Senior Director, Patient and Health Impact
    Pfizer, United Kingdom
  • Veronique  Heon-Klin
    Veronique Heon-Klin
    The Federal Ministry of Health, Germany
  • Edmund  Jessop, DrMed
    Edmund Jessop, DrMed Medical adviser at NHS England
    National Health Service, United Kingdom
  • Helena  Kääriäinen
    Helena Kääriäinen Research Professor
    National Institute for Health and Welfare, Finland
  • Kristina  Larsson, MS
    Kristina Larsson, MS Head of Orphan Medicines, Division for Human Medicines Evidence Generation
    European Medicines Agency, Netherlands
  • Yann  Le Cam, MBA
    Yann Le Cam, MBA Chief Executive Officer
    Eurordis-Rare Diseases Europe, France
  • Jordi  Llinares Garcia, MS
    Jordi Llinares Garcia, MS Head of Research and Innovation
    European Medicines Agency, Netherlands
  • Flaminia  Macchia
    Flaminia Macchia Director
    Vertex Pharmaceuticals (france) SAS, France
  • Kay  Parkinson, JD
    Kay Parkinson, JD Director
    Alstrom Syndrome Europe (AS EU), United Kingdom
  • Vinciane  Pirard, MD
    Vinciane Pirard, MD Senior Director Public Affairs (Europe & International)
    Sanofi-Genzyme, Belgium
  • Gayatri R. Rao, JD, MD
    Gayatri R. Rao, JD, MD
    Rocket Pharmaceuticals, Inc., United States
  • Ana  Rath
    Ana Rath Managing Editor
    Orphanet-Inserm, France
  • Miriam  Schlangen
    Miriam Schlangen
    Namse Geschäftsstelle, Germany
  • Domenica  Taruscio
    Domenica Taruscio Director
    National Center for Rare Diseases, Italy
  • Till  Voigtländer
    Till Voigtländer Clinical Institute of Neurology
    University of Vienna, Austria

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