European Year for Rare Diseases

Thank you for your interest in the campaign to make 2019 the European Year for Rare Diseases. 

Over the last 20 years, EURORDIS and the wider rare disease community have advocated to raise awareness and to improve the lives of people living with a rare disease. We continue to do this and achieve success in our efforts.

EURORDIS is no longer actively campaigning to make 2019 the European Year for Rare Diseases and will be concentrating efforts on activities that raise awareness and move rare diseases up the agenda of policymakers, including: the European Reference Networks and the work done within the Joint Action on Rare Diseases ‘RD-ACTION’; new and developing proposals to improve patients’ access to medicines; Rare Diseases International and the NGO Committee for Rare Diseases, among others.

Read more about recent developments in EU collaboration that will improve the lives of rare disease patients and their families, as well as EURORDIS' recent Declaration on Rare Diseases.

Thank you to those of you who signed up to the European Year campaign and for your hard work in promoting it among policy makers. Collectively, our efforts are making a difference.

Find out more about other ways that you can continue to raise awareness and be part of the rare disease community:

• Join Rare Barometer Voices to make your voice heard! Your experiences will go towards influencing rare disease policy makers.
• Get involved in Rare Disease Day.
• Nominate somebody for a EURORDIS Award.
• Join RareConnect.org, the online community for rare disease patients and families.
• Take part in online training for rare disease patient advocates.
• Join a European Patient Advocacy Group (ePAG).