The 1st of August marks the beginning of SMA Awareness Month.
Despite all the advances in research, care, and treatments, there is yet a lot to be done to ensure people living with SMA and their families attain the best quality of life across Europe.
SMA Europe's 24 members work together every day to create a better world for all those living with SMA.
Mencía de Lemus, our Spanish delegate, has been appointed as a member of the Committee for Advanced Therapies, representing patients' organisations.
SMA Europe wants to give You a louder voice in research!
We are launching a project called the “SMA Priority Setting Partnership”, in collaboration with the James Lind Alliance, to identify the top 10 unanswered research questions that are a priority to people living with SMA, their carers and healthcare professionals.
We will soon launch a survey which will allow you to tell us what research would matter to you most. Keep a look out!
The ASCEND study is a global clinical trial initiated by Biogen to evaluate if patients who have previously received treatment with risdiplam, an approved SMA drug also known as Evrysdi® (risdiplam), and may not have achieved optimal clinical outcomes (e.g., improvement or delay in disease progression), may benefit from receiving a higher dose of nusinersen, also known as Spinraza® (nusinersen).