Rare Disease Day 2010: Coming up!
Rare Disease Day is fast becoming a key date in the rare disease calendar. This coming February, EURORDIS is expecting all rare disease patient organisations in Europe and many throughout the world to join in the celebrations. As in previous years, patient organisations and their partners are invited to organise events around rare diseases and the topics at the heart of patients: conferences, workshops, walks, demonstrations, interviews with media, awards, competitions, fundraisers, street stands, and anything else you can think of, to bring attention to rare diseases and the people living with them.
Who can take part? Anyone who wants to (and agrees to adhere to the spirit and to the theme): individual patients, patient organisations, national alliances and European federations, health professionals, researchers, drug developers, health authorities... the more, the better!
All participants are encouraged to concentrate their efforts to highlight this year's focus on rare disease research. Rare Disease Day 2010 will be the occasion for patients to reach out to researchers and show that collaboration is not only possible but necessary. To illustrate this, EURORDIS is looking for stories of successful partnerships between patients and researchers. We are also asking patient organisations to nominate a scientist who has helped advance research into their disease - to populate our own Rare Disease Research Hall of Fame! All this and more, will be readily available on the Rare Disease Day website specially upgraded for 2010.
Rare Disease Day will address the general public first and foremost, but its messages will also be targeting European and national authorities and policy makers, researchers, clinicians, academics, the pharmaceutical and biotech industry, as well as the media. The day aims to:
- Raise awareness of rare diseases and reinforce their importance as a public health priority
- Strengthen the voice of patients
- Provide hope and information to patients affected by rare diseases, especially those for whom a support network is not available
- Reinforce international collaboration in the fight against rare diseases
More specifically, in 2010, Rare Disease Day will seek to:
- Promote research interest in the field of rare diseases
- Promote collaboration between patients and researchers
- Shape public policy and influence the research agenda
In order to contribute to this objective, EURORDIS has conducted a survey of over 1,000 patient organisations to find out how patients support research and what areas of research should be given priority. The results of the survey will be presented at a European workshop organised by EURORDIS, on the occasion of Rare Disease Day, on Monday 1 March 2010, in Brussels. The event will also be the opportunity to make the case for rare disease research to be included in European and national funding schemes.
More detailed information about this event and about the activities organised by national alliances and local patient groups, can be found on the Rare Disease Day website. If you would like to get involved you can do so by contacting your national alliance or EURORDIS directly at firstname.lastname@example.org. Individual patients can also participate by entering the photo and video contests in the 'Tell Your Story' section of the website. They can also share their stories on Facebook and post their photos (with testimonies in their own languages) on the Photo Wall specially created for this awareness Day. To find out the latest go to www.rarediseaseday.org. Get involved - this day is our Day to put rare diseases in the spotlight!
This article was previously published in the December 2009 issue of our newsletter.
Author: Paloma Tejada
Photo credits: © EURORDIS & Inserm