Two of the three available seats for patient experts taken by TreatSMA trustees for the Risdiplam appraisal taking place on the 11th May 2021.
On the 11th of May, Trustees Lucy and Andi will represent the real community experience as TreatSMA nominees as we believe that both adults and parents should have a voice. Andi has lived with SMA all his life and deeply understands what it is like and his account will be based on first hand experience (not simple repetition of other people words). Equally, Lucy, a mother to child who lived through no treatment, and is now benefiting from the treatment, offers a parent’s perspective.
We are pleased that we are able to represent the community from both perspectives and we know both Lucy and Andi will fight for all during the appraisal.
We represent the community because we are the community.