ECRD 2010 Krakow: Momentum for rare diseases

European policy on rare disease gathers momentum at the European Conference on Rare Diseases - ECRD 2010 Krakow

An unprecedented number of participants attended the largest ever European Conference on Rare Diseases (ECRD), which was held in Krakow, Poland on May 14 & 15, 2010.

Over 600 participants from 43 countries, a third of which came from Eastern Europe, gathered to discuss key policies and actions to improve the lives of those affected by these conditions.

ECRD 2010 Krakow WEBSITE

PHOTOS of the Conference and participants

VIDEO INTERVIEWS

LIVING WITH A RARE DISEASE:  Patients and family members tell us about daily life with a rare disease

PLAY DECIDE Participants tell us what they thought of the experience

PRESS RELEASES

19 May 2010: European policy on rare disease gathers momentum at the European Conference on Rare Diseases ECRD 2010 Krakow
18 May 2010: Polish stakeholders sign petition for a National Plan for Rare Diseases during the European Conference on Rare Diseases (ECRD Krakow 2010)   

PRESENTATIONS
To see the speakers’ presentations, click on the speaker’s name.
May 14th
May 15th

Videos of some patient partipants

Videos of patient participants talking about what it is like to live with their rare disease - (Videos in several languages)

Dr Andrzej Ryś, Director for Public Health at the European Commission, opened the Conference by declaring that the overall number of patients suffering from rare diseases, the high European added value due to the rarity of patients and experts for each rare disease together with the limited access to information, to treatment opportunities and drugs available, constitute a challenge that justifies action from the European Union in this field. He highlighted that Member States have until 2013 to adopt rare disease plans or strategies in their own countries based on common policy recommendations.

According to Director of Orphanet, Dr Ségolène Aymé’s presentation, National Plans have already been adopted in France, Portugal, Greece, Bulgaria and Spain, and are well under way in Germany, Romania and the UK. The first steps have been taken in other countries, such as Poland, host to the Conference.

“This ECRD 2010 Krakow has served to identify those areas that need better policies in order to fulfil the objectives of the Council Recommendation and to build momentum for national plans and strategies to be implemented across Europe,” declared Yann Le Cam, CEO of the European Organisation for Rare Diseases (EURORDIS). “Indeed, the momentum applies to Poland as 20 Polish patient representatives, healthcare professionals and scientists met on the first day of the Conference to sign a Common Declaration to the government calling to establish a National Plan for Rare Diseases in Poland. They also suggested following the EuroPlan guidelines to accomplish their goals."

Measures to improve accurate diagnosis and early treatment of many rare diseases were presented at the Conference, namely:

• Coding and classifying rare diseases and integrating them in the WHO’s International Classification of Diseases system.
• Identification and support of centres of expertise in all European countries and pooling existing expertise through European Reference Networks.
• Sharing research infrastructures (databases, biobanks and registries), involving patient organisations in clinical trials
• Making the best use of knowledge and funds for genetic testing.

The ECRD 2010 Krakow was also the occasion to present the EU Committee of Experts on Rare Diseases. The Committee, which will include around 50 representatives of all stakeholder groups, will act as a sort of ‘Parliament’ of the rare disease community in order to followup on the work initiated at the biennial Conference.

The ECRD series is a unique forum that sees patient representatives of all the rare diseases, from the majority of European countries and further afield, gather with healthcare professionals, academics, researchers, policy makers and industry representatives to discuss the most recent rare disease initiatives in the fields of research, healthcare, information and social services.

ECRD 2010 Krakow is organised by The European Organisation for Rare Diseases (EURORDIS) in partnership with Rare Disorders Denmark, the National Health Institute (UK) and the Fundacio Doctor Robert, Autonomous University of Barcelona. It is primarily supported by the Public Health Programme of the European Commission, cofunded by CSL Behring, Novartis and Sigma Tau, with additional sponsorship from 10 other companies.

For more information visit: www.rare-diseases.eu

Author: EURORDIS

Photos: © Eurordis/Sylvain Gouraud;
Photos on Eurordis flickr site also: Photos by Vesa Nopanen, the father of a little girl, Laura, with dysmelia.