A curated list of verified sources, international organizations and practical steps. Use them and share with those in need.
Why this page exists
The SMA diagnosis brings a hundred questions at once. Parents and patients spend days looking for information that doctors cannot explain in a 15-minute consultation. Here we have collected resources we have verified ourselves — so you do not have to search from scratch.
International organizations
Verified websites, in English or other EU languages — use Google Translate if needed.
SMA Europe
European federation of SMA associations. Clinical trials, patient guidelines, EU-level advocacy.
Cure SMA (USA)
World's largest SMA organisation. Materials for parents, patients and medical professionals.
TREAT-NMD
International research network for neuromuscular diseases. Maintains the SMA Standards of Care and clinical registries.
Where to start
Concrete steps, in logical order, for a family that has just heard the word "SMA".
Confirm the genetic diagnosis
SMA is confirmed only by genetic testing (SMN1 gene analysis). Ask your doctor for a referral to a medical genetics lab.
Find a pediatric neurologist
In Moldova, the main specialists are at the Em. Coțaga Republican Clinical Children's Hospital and at the National Centre for Reproductive Health and Medical Genetics.
Check CNAM coverage
Ask CNAM (National Medical Insurance Company) which services are covered. Request the answer in writing — it will be useful.
Connect with the community
Write to us via the floating button below or on the contact page. We will connect you with other families and helpful sources.
How you can help us do more
This page is alive — we constantly add new resources and contacts. If you know doctors, NGOs, journalists or people with relevant experience whom we could include — write to us. The community grows thanks to each contributor.