European Organization for Rare Diseases (EURORDIS) by Anja Helm, Senior manager of relations with Patient organizations, EURORDIS
Ms Helm started by defining rare diseases: “A rare disease in Europe is a disease affecting less than 1 in 2,000 citizens”
EURORDIS is an international non-profit, non-governmental umbrella rare disease patients’ organisation representing an estimated 30 million individuals in Europe. It was founded in 1997 and it represents more than 600 rare disease organisations in 56 different countries (26 EU members). The organization represents 600 additional organisational members of national alliances or European federations of rare disease patients.
EURORDIS advocates on behalf of rare disease patients and is positioned at the heart of the European rare disease policy and regulatory framework. Since 2000, EURORDIS has advocated for rare diseases to be included in the research and health programmes of the European Commission.
Every year EURORDIS organizes an annual four day training on: clinical trials, medicines development and EU regulatory Processes only for patents. The Summer school takes place in Barcelona, Spain.
The next EURORDIS Summer School will be organised from June 2nd-6th, 2014 in Barcelona, Spain
Anja Helm introduced to the audience an on-line service called Rare Connect. It is a virtual free-access rare disease community of patients and doctors which allows sharing of information in 6 different languages thanks to an automatic free translation service. It currently has over 48 communities involving over 400 patient associations.