viernes, 29 de noviembre de 2013

The European Conference on Rare Diseases & Orphan Products (ECRD Berlin 2014): creating sustainable strategies

The European Conference on Rare Diseases & Orphan Products (ECRD Berlin 2014): creating sustainable strategies


Eurordis, Rare Diseases Europe The voice of rare disease patients in Europe


The European Conference on Rare Diseases & Orphan Products (ECRD Berlin 2014): creating sustainable strategies

ECRD jigsaw puzzle pieceMembers of the rare disease community will be gathering in Berlin, Germany, on 8-10 May 2014 for the European Conference on Rare Diseases & Orphan Products (ECRD 2014 Berlin). We hope to see you there, too!
Up to 700 members of the European and international rare disease movement are expected to attend the ECRD 2014 Berlin. The call for poster abstracts is still open, presenting a real opportunity for conference attendees to share their activities with other members of the rare disease community. Selected posters will be displayed in a dedicated space during the conference with specific poster sessions held each day. Patient organisations, academics, healthcare professionals and any other interested parties are warmly encouraged to submit a poster (deadline 15 December 2013).
These are exciting times for the rare disease community in Europe and beyond. The key pieces of the rare disease puzzle have been identified and we need to work together now to put these pieces into place to ensure people living with a rare disease have the best care and treatment possible. Every member of the increasingly international rare disease community has a vital role to play. Europe is taking a leading role in fuelling the movement, serving as a model as more Member States adopt their national rare disease strategies and a new EU research funding era begins with the upcoming Horizon 2020 programme. Meanwhile, the International Rare Disease Research Consortium (IRDiRC) is fostering unprecedented rare disease collaboration on a global scale.
The half-day Opening and Plenary Session and other key Sessions of the ECRD 2014 Berlin will be available in a number of languages via simultaneous interpretation, reflecting the growing international dimension of the conference. The ECRD provides a wonderful opportunity for networking, allowing us all to learn from one another.
The major overarching themes of the ECRD 2014 Berlin include 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; and Beyond Medical Care. These themes have been carefully elaborated to create discussion that allows us to move forward, putting the pieces of the rare disease puzzle into a coherent picture that provides a strategy and sustainable plan for addressing the needs of people living with a rare disease.
Earlybird Registration is now open for the ECRD 2014 Berlin. The dedicated ECRD 2014 Berlin website is available in English, French, German, Spanish, Polish and Russian languages. The preliminary programme and full conference details are already available on the website. ECRD 2014 Berlin may be the most exciting conference yet for the rare disease community – we hope that you will be there with us!
Yann Le Cam
Chief Executive Officer
Page created: 27/11/2013
Page last updated: 26/11/2013

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