Campaign for Access to Treatments for Spinal Muscular Atrophy

TreatSMA becoming a member of Genetic Alliance.

A person with SMA impacts the NHS on average £49,723 annually in direct costs, while a loss of productivity per unpaid caregiver costs the society £14,350 each year.

On 28^th February we bade farewell to the European Medicines Agency as it relocated from London to Amsterdam.

SMA families held a protest in Manchester to demand access to the only effective therapy for spinal muscular atrophy.

On 6^th March, we will gather in front of NICE Manchester office to loudly demand access to Spinraza. But there are rules to follow.

UK’s leading clinicians have published an open letter in The Guardian, urging the health authorities to provide access to Spinraza treatment.

An estimated 30 to 40 thousand people with spinal muscular atrophy will soon have access to the first-ever effective treatment for this life-limiting disorder as China’s health authorities granted marketing authorisation to nusinersen (Spinraza®).

Thousands of people are taking to streets across Croatia. The reason is that Spinraza, the life-saving treatment for spinal muscular atrophy, is not available there for adults living with SMA.