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How can I connect with other families?

Patient organizations, online communities and the international LAMA2 community can help connect you with other families. Talking to families who truly understand what you are going through is invaluable, both practically and emotionally. Connecting with others who share your experience can make an enormous difference. If you are not sure where to start, contact us and we can help direct you.

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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? 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?

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