100 days to Rare Disease Day 2017!
The Voice of Rare Disease
Patients in Europe
100 days to Rare Disease Day 2017!
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:
- Become a friend of Rare Disease Day – everyone (companies, patients, researchers, healthcare providers and academics alike) can become a friend of Rare Disease Day!
- Raise and join hands to show your solidarity with rare disease patients around the world.
- Tell your rare disease story on Rarediseaseday.org.
- Hold an event - every year thousands of events take place at hospitals, patient organisations and research institutions across the world. Raise awareness by holding an event with fellow patients, policy makers, researchers or health care practitioners. If you are a patient or from a patient organisation you can post your event on Rarediseaseday.org. You can also see other events taking place.
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:
- A Multi-Stakeholder Symposium on Improving Patients’ Access to Rare Disease Therapies on 22 -23 February, the plenary session of which will be live streamed via Eurordis.org/live
- The EURORDIS Awards & Black Pearl Evening on 21 February, including the EURORDIS Awards Ceremony 2017, which will also be live streamed via Eurordis.org/live. Companies can become partners of the EURORDIS Black Pearl Evening (please email firstname.lastname@example.org for more details) or purchase a seat to attend.
*Please remember, the Rare Disease Day logo cannot be used for commercial purposes. More detail.
Eva Bearryman, Communications Manager, EURORDIS