As we published earlier in the week TreatSMA is proud to be supporting the Royal Holloway’s 10th Annual Rare Disease Day Event on Wednesday 26th in support of Rare Disease Day. However, the excitement doesn’t stop there.
We have two amazing things happening on Rare Disease Day this Saturday, 29th February. Firstly, in the morning we will be presenting a video from treatSMA trustee, Kelly and her son Vinnie, showing what a day looks like for them managing SMA.
The second event is an exclusive webinar where we are fortunate enough to have representatives from a number of rare conditions talking about the condition, how it affects them and their families. While we fight for SMA it’s important to note that we, as part of the rare disease community, have to support each other to ensure our voices are heard. This is a great opportunity for all organisations to do something jointly and to help get our message out.
Posters of the events can be accessed below, they have all the appropriate information, please do share as much as you can.