In less than two weeks we will start celebrating Rare Disease Day – that annual day when all those who are affected by a rare disorder go out and speak about it. The global rare disease community holds celebrations throughout the world. This year TreatSMA will take part with an online campaign and a face-to-face event in the South East.
The 29th February is the rarest day in the calendar. It has become the day to celebrate and build awareness of rare diseases, which in Europe mean diseases that individually affect fewer than one in 2,000 people. When there is no 29th February in the given year, celebrations are held on the 28th – always the last day of the month.
Spinal muscular atrophy is a rare disorder as it affects one person in around 10,000.
The idea of a special day to build awareness of rare diseases came from EURORDIS, the European Organisation for Rare Diseases which started the tradition in 2008. Throughout the years, EURORDIS have been very supportive of the SMA community’s efforts to secure broad approvals for SMA therapies, was one more way they were intertwinned with SMA.
On Tuesday 26th February, TreatSMA along with 11 other rare disease organisations will have a stall at the Rare Disease Day at the Royal Holloway in Egham, Surrey. We will talk about living with SMA and about our ongoing battle for treatment. While there are no more tickets left, you can join the global efforts by spreading the word online – sharing the attached poster and leaflet and encouraging people to visit www.rarediseaseday.org.
