Next Wednesday 29th February is a particularly important day. It not only maintains the accuracy of the calendar, but marks Rare Disease Day 2012. This year, Rare Disease Day falls on the rarest day in the calendar, like the first Rare Disease Day in 2008.
The theme for Rare Disease Day 2012 is ‘Solidarity: Rare but strong together’. Often it is not recognised that while single rare conditions may affect a relatively small number of people, as a whole there is a very large population affected by the approximately 7000 rare diseases. In the EU, up to 30 million people may be affected by a rare disease. Each rare disease faces many of the same challenges, be it greater access to diagnostics or facilitated development of therapies, which makes it effective to address the needs of the rare disease community together.
This focus on the rare disease community as a whole, on the parallel challenges and achievements of each community, will be evident in the activities that are planned for the day. EURORDIS is hosting a conference in Brussels to review European programmes for increased collaborative rare disease support. Orphanet and L’Alliance Maladies Rares are holding photo exhibitions and games in the buffet areas of national trains in France to engage travellers. London’s day, hosted by Royal Holloway University of London, welcomes families affected by rare diseases, charities, scientists, health professionals, students and anyone else interested. Paralympic gold medalist Helene Raynsford, who is diagnosed with Ehlers-Danlos syndrome, will be the featured keynote speaker. The BHD Foundation is pleased to be participating in the exhibition. A number of events also engage a younger audience; the London schedule includes talk on genetics and lab visits, while teachers in the United States have access to resources to supplement biology courses on Rare Disease Day and families in Québec can enjoy a ‘Rare Day at the Zoo’.
The National Institutes of Health (NIH) in the US will again hold a day conference to reflect on research efforts in rare diseases; Dr Francis Collins, the Director of the NIH, is scheduled to speak. A number of cities around the world will be hosting conferences on rare disease research, policy and legislation, including Ottawa, Canada, Beijing and Moscow. Over 60 countries are joining to mark Rare Disease Day; go here to see which events will be taking place in your local area.
This year, Rare Disease Day will also see launches of new initiatives. The French national Rare Diseases Foundation (Fondation Maladies Rares) will open with events at the Academy of Sciences in Paris. The Fondation Maladies Rares is a pertinent example of the ‘Solidarity’ theme; it will strive to develop resources and an infrastructure that will benefit the rare disease collective (previously discussed here). Additionally, the rare disease community might soon find a more unusual but high profile source of support: Lady Gaga will be launching her Born This Way Foundation on 29th February, focused on counteracting discrimination and inequalities among young people, including those based on medical conditions.
Visit the Rare Disease Day 2012 site for more information about the day, ideas on how to engage your community, and opportunities to share your story.