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Dezembro 2014

Available Now: Executive Summary of the 2014 European Conference on Rare Diseases


ECRD 2014 Berlin

A record 768 attendees from 43 countries took part and over 200 posters were presented at this year’s European Conference on Rare Diseases & Orphan Products (ECRD), the biggest yet since the first took place in 2001.

The 7th ECRD, co-organised by EURORDIS and DIA (the Drug Information Association), took place in May of this year in Berlin. Download the newly available ECRD Executive Summary to view the full conference programme, a breakdown of attendees, a list of posters and summaries of the themes and sessions.

You can also view a special ECRD supplement of speaker and poster presentations featured in the Orphanet Journal of Rare Diseases.

The event, which takes place every two years, is a unique platform across all rare diseases and European countries, bringing together patient representatives, academics, healthcare professionals, industry, payers, regulators and policymakers.

The Rare Disease Puzzle

The theme of this year’s ECRD was ‘The Rare Disease Puzzle: Bringing the Picture to Life’; the puzzle pieces addressing the needs of the rare disease community have been identified over the past two decades, but a challenge remains to combine those pieces to drive action and help form a coherent rare disease plan.

During the opening session, Lesley Greene, Vice-Chair of the European Medicines Agency Committee for Orphan Medicinal Products, Vice-President, Climb (Children Living with Inherited Metabolic Diseases) and volunteer Patient Advocate, EURORDIS, commented,The near 800 stakeholders attending ECRD 2014 Berlin represent the individual pieces of a puzzle, with each participant looking for a solution to the same jigsaw. Patients and families are forced into this search; the day that they receive the news that they or someone they love is affected by a rare disease, their life changes and from that day forward they spend vast amounts of time and energy looking for information, targeted research, care, treatments and a cure. Other stakeholders, from researchers to industry, are driven both by inquisitiveness and the desire to relieve suffering to try and transform the untreatable into the manageable and curable.” For Ms. Greene, ECRD 2014 Berlin was about joining together, sharing, collaborating, and with the presence and participation of everybody at the conference, bringing the rare disease picture to life.

ECRD Objectives and Themes

Conference objectives this year included: to disseminate the most up-to-date rare disease health information; to demonstrate the importance of EU rare disease actions; to elaborate strategies and mechanisms for developing further exchange of information between stakeholders; and to exchange knowledge and best practices on all relevant rare disease health issues.

In total, 38 sessions took place covering the six following themes:

  • Improving Healthcare Services
  • Knowledge Generation and Dissemination
  • Research from Discovery to Patients
  • State of the Art and Innovative Practices in Orphan Products
  • Emerging Concepts and Future Policies for Rare Disease Therapies
  • Beyond Medical Care
     

Save the Date

Don’t miss the next ECRD taking place in Edinburgh, Scotland, from 26 – 28 May, 2016!


Eva Bearryman, Junior Communications Manager, EURORDIS