My child has just been diagnosed. What should we do next?

This is an overwhelming time, and it is completely normal to feel lost or frightened. Key first steps: seek a referral to a specialized neuromuscular centre (a clinic with expertise in muscle diseases), connect with a patient organization, build a multidisciplinary care team (a group of specialists), and start physiotherapy as early as possible. You do not need to have all the answers right away. If you are not sure where to start, contact us and we can help direct you.

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? Where can I find reliable information? What questions should I ask my healthcare team?

My child has just been diagnosed. What should we do next?

Related questions

The driving forces behind Lama2.com