SMA Europe has launched an alliance that is demanding that, by 2025, newborn screening programs in Europe include a test for spinal muscular atrophy (SMA).

The new European Alliance for Newborn Screening in Spinal Muscular Atrophy (SMA NBS Alliance) was launched as a final initiative to mark this year’s SMA Awareness Month.

Its members include the 19 patient organizations that are part of SMA Europe, as well as EURORDIS — Rare Diseases Europe, the European Alliance of Neuromuscular Disorders Associations, TREAT-NMD, and pharmaceutical companies AveXis — now Novartis Gene Therapies — Biogen, and Roche, SMA Europe said in a press release.

To help achieve its goal of having every newborn in Europe tested for the neurodegenerative disorder, the members of the SMA NBS Alliance will take part in a variety of activities explaining why SMA should be included in national screening programs. These activities include writing a white paper, or an in-depth report on the subject.

In addition, members are organizing activities in their respective countries aimed at getting health regulators to consider adding SMA to newborn screening panels. National screening committees regularly review screening recommendations for various conditions as new evidence becomes available.

Newborn screening is important in identifying a progressive and often life-threatening disease in the hours after birth, allowing a child to be treated before irreparable damage is done. Early detection and diagnosis may mean the difference between life and death for an infant with a severe form of SMA.

We hope that with newly launched treatments, reviews will now take place and following new applications, revised guidance will be delivered across countries to include SMA. Newborn screening allows to treat children with SMA, before motor neuron destruction, thus giving them a chance of a normal life.
SMA Europe

 

 

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