Join the campaign to make 2019 the European Year for Rare Diseases
A European Year for Rare Diseases
Each year since 1983, the European Union has chosen a different topic for the European Year in order to raise awareness and encourage debate and dialogue within and between European countries.
EURORDIS is proposing to make 2019 the European Year for Rare Diseases! This initiative, enthusiastically adopted by members at the EURORDIS General Assembly in May 2013, presents a unique opportunity to build significant awareness both publically and politically for rare diseases and to foster more research in the field.
2019 is an important year for the European rare disease movement. It marks the twenty-year anniversary of the adoption of the EU Regulation on Orphan Medicinal Products as well as the ten-year anniversary of the Council Recommendation on rare diseases. What better way to celebrate these major milestones than with a European Year for Rare Diseases!
A European Year for Rare Diseases would help find solutions both in the public and political spheres to the challenges that patients, families and care-givers face. It would encourage researchers to focus on rare diseases, and create conditions for better health, medical and social care for all.
Mark your calendar! EURORDIS is organising an Informational Webinar to inform and answer questions about the campaign. Taking place on 23 October at 15:00 (Central European Time) the webinar will present the objectives and value of the European Year for Rare Diseases campaign and explore ways you can get involved, including the freely available informational tools you can use on your websites and social media platforms to help create energy and excitement around the movement!
Add your name to the campaign
Publicly express your support for the European Year for Rare Diseases by adding your name to the campaign via a dedicated page on the EURORDIS website, available in English, French, German, Spanish, Italian,Portuguese and Russian. Please use our informational tools to encourage all your organisation members, healthcare and scientific contacts, and family and friends to join the campaign and add their names, too. The more sign-ups we have, the stronger our message will be when we call upon the European Commission to make 2019 the European Year for Rare Diseases.
Let's do it! Let's make 2019 the European Year for Rare Diseases!
Louise Taylor, Communications and Development Writer, EURORDIS