We at SMA Europe and on behalf of the entire SMA NBS Alliance are extremely grateful to receive the Black Pearl 2022 Company Award for Patient Engagement. We would like to thank EURORDIS-Rare Diseases Europe and all its nearly 1000 rare disease patient group members for this recognition.
SMA Europe also recognizes and expresses its gratitude to the organizations and companies that make up the Alliance. When they were asked to support patients in advocating for newborn screening, Alliance members all saw the value in working together.
The Alliance’s mission is simple….
There is no more time to waste for babies born with SMA – The SMA NBS Alliance demands newborn screening programmes for SMA in all European countries no later than 2025.
Identifying children living with SMA through NBS allows for treatment to be started on time, preventing motor neuron loss and a life with severe disability or even death.
We need NBS for SMA now, it’s the only way to save lives and avoid permanent disability that impacts both the lives of children born with SMA and their families.