Rare disease game changers at ECRD 2016

The youth panel at ECRD 2016

The 8th edition of the European Conference on Rare Diseases & Orphan Products (ECRD 2016) brought together over 750 attendees from nearly 50 countries in Edinburgh, Scotland, UK.

Over 120 session chairs, speakers and panelists led discussions on the theme of game changers in rare diseases and exchanged on game-changing policies and initiatives in research, diagnosis, drug development, authorisation and access, care provision, social policy and global society.

See the ECRD 2016 Executive Summary including the game changers identified in the conclusions of each theme, the ECRD 2016 conference photos and the 200+ posters.

Videos of the opening, plenary and closing plenary sessions, are also available, including: 

  • A keynote address from Maureen Watt, Minister for Mental Health, Scottish Government, whose much tweeted quote on rare disease patients set the tone of the conference, “It's not just ‘What's the matter with you?’ but ‘What matters to you?’ ”.

  • George Freeman MP, UK Minister for Life Sciences

  • Igor Ban, rare cancer survivor and RareConnect Web Content Manager, who gave a moving account of the war that his family fought against his acute lymphoblastic leukemia.

  • A keynote from Professor Tom Shakespeare from Norwich Medical School, UK, who spoke on the medicalisation of disability and said, “Human beings come in different shapes and sizes, we need to change the world to accept that fact, not change us to fit into the world”.

  • Alastair Kent, Director of Genetic Alliance UK, who said, “As patients and families we are part of the solution and we demand to have our voice heard”.

  • An inspiring youth advocates panel in which 6 youth panelists talked about their personal rare disease stories and also discussed the importance of social media in connecting the rare disease community.

  • A speech from Xavier Prats Monné, Director General of the Directorate-General for Health & Food Safety, European Commission, who said, “Our priority is and will continue to be supporting rare diseases and European Reference Networks”.

All conference speaker presentations are available by clicking on the links in speakers’ names in the theme dropdown menus on Friday’s agenda and Saturday’s agenda.

ECRD 2016 is unique in involving the entire rare disease community (patient representatives, academics, healthcare professionals, industry, payers, regulators and policy makers) across all rare diseases and borders, and encourages knowledge sharing between participants from countries all over Europe and the world.

The transformational nature of the outcomes from ECRD 2016 will be to help inform EU policies, the Commission Expert Group on Rare Diseases, the EU Joint Action on Rare Diseases 'RD-Action', the EU Health Programme and the EU Framework Programme for Research and Innovation 'Horizon 2020'.

Save the date for the next ECRD, 10 – 12 May 2018 in Vienna, Austria!


Eva Bearryman, Communications Manager, EURORDIS

Page created: 27/07/2016
Page last updated: 13/09/2016
 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases