Where can I find reliable information?

Reliable sources include your local, specialist neuromuscular centre, patient organizations, this website, CureCMD, and peer-reviewed medical information written for patients. Be cautious about information from unverified sources on social media. If you are not sure where to start, contact us and we can help direct you.

My child has just been diagnosed. What should we do next? What can we expect in the coming years? How do I explain the diagnosis to family and friends? How do I talk to siblings? How can I connect with other families? What financial support may be available? Which organizations can help us? How can parents avoid caregiver burnout? What questions should I ask my healthcare team?

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