100 days to Rare Disease Day 2017!

Rare Disease Day

The countdown has begun! With only 100 days left until the tenth edition of Rare Disease Day on Tuesday 28 February, rare disease patients and organisations around the world have already started preparing their Rare Disease Day activities and events.

Get involved in Rare Disease Day 2017:

EURORDIS brings together the patient community and the 39 national rare disease alliances that are partners of Rare Disease Day. Since the launch of Rare Disease Day, thousands of events have taken place around the world. The Rare Disease Day campaign started as a European event and has progressively become a worldwide phenomenon, with participation in over 80 countries around the world in 2016.

Rare Disease Day 2017 theme - Research

The Rare Disease Day 2017 theme is research. Rare disease research is crucial to providing patients with the answers and solutions they need, whether it is a treatment, cure or improved care.

Rare Disease Day 2017 will see thousands of people around the world come together to advocate for more research on rare diseases. Over the last few decades, funds dedicated to rare disease research have increased. But it can’t stop there.

Rare Disease Day is an opportunity to call upon researchers, universities, students, companies, policy makers and clinicians to do more research and to make them aware of the importance of research for the rare disease community.

In line with this year’s theme, the BLACKSWAN Foundation has launched a petition calling for more support for rare disease research.

Rare Disease Day 2017 is also an opportunity to recognise the crucial role that patients play in research. Patient involvement in research has resulted in more research, which is better targeted to the needs of patients. Patients no longer solely reap the benefits of research; they are empowered and valued partners from the beginning to the end of the research process.

EURORDIS Rare Disease Day events

EURORDIS is holding two events in February 2017 to mark the occasion of Rare Disease Day:



*Please remember, the Rare Disease Day logo cannot be used for commercial purposes. More detail.

Eva Bearryman, Communications Manager, EURORDIS

Page created: 20/11/2016
Page last updated: 18/11/2016
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases