Despite steady advancements in the past years, gaps in Spinal Muscular Atrophy (SMA) care persist across the bloc.
SMA is a rare genetic neuromuscular disease that affects the central nervous system, peripheral nervous system, and voluntary muscle movement.
Standards of care are now available to manage symptoms and help people enjoy an optimum quality of life, but access to treatment is not the same across Europe.
In this series of articles, EURACTIV digs into policy options to ensure patients the chance to live with this rare disease.
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Access to SMA standards of care remains an open issue in Europe
For people living with spinal muscular atrophy (SMA), access to suitable and effective treatment often depends on which EU country they live in. Stakeholders are now calling for equal access to standards of care across the bloc.
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MEP: Raising awareness on SMA without fighting for inclusion leads to isolation
Social rights and better inclusion in society are the areas where people living with Spinal Muscular Atrophy (SMA) need more improvements, Greek EU lawmaker Stelios Kympouropoulos told EURACTIV.
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Rare Diseases in the EU: Learning from Spinal Muscular Atrophy
There are 6,000 rare diseases identified to date and an estimated 30 million people living with a rare disease in Europe alone. Furthermore, there is no approved treatment for 95 percent of rare diseases. These staggering numbers …