We were sent this information and thought it may help some families to know Family Fund offers grants towards ipad/laptops for disabled children. To find out if you are eligible or apply please visit their website here
TreatSMA wish you good health and access to treatments in 2021. 2020 was a busy year for us as we continued to fight for access for children and adults to Spinraza, Zolgensma and the EAMS for Risdiplam. We have continued to post educational Webinars as a community resource – totalling 36 Webinars, you can watch…
It’s been a long wait and somewhat of a battle but we are pleased to announce that Cambridge University Hospitals have finally approved the use of risdiplam through the DTC in line with the EAMS guidance.
We have spoken to Roche, Novartis Gene Therapies and Biogen about the continued supply of treatments for Spinal Muscular Atrophy. All three companies have clearly indicated that over the past 2 years they were preparing for various outcomes of Brexit negotiations, including a no deal option. As a result of those preparations there is now…
This is a question many people asking about the Covid-19 vaccine considering it was approved so quickly. MHRA chief executive explains the process in the article below to reassure.
We had a special guest at TreatSMA today, Santa Claus asked to speak to everybody via video conference to share a message to us all. This was live on Facebook but for those who do not follow us on social media please find the video above.
We are really excited and pleased to inform you that our very own Trustee, Andi, who has SMA type 2 has been chosen to sit on the panel for NICE appraisal of Risdiplam. Andi will be the first adult with SMA sat on the committee out of the drugs appraised so far. With access to…
As you know our mission is treatment for all, and we have continued this fight by exposing Cambridge University Hospitals of their continued age discrimination against those with Spinal Muscular Atrophy. Equal access to health is the very tenant of the NHS yet CUH seem to feel otherwise.
