Looking for parents with children withcentro nuclear myopathy?

lookint to chat with another parent with a daughter with centro nuclear myopathy

Centronuclear myopathy is rare, but there appears to be a support group for patients families located at the link below. If the group is active, they can probably put you in touch with someone to talk to.

If not, you can try asking the doctors who diagnosed your daughter, or contacting the pediatrics department at a nearby research hospital or medical school (often they will have seen rare diseases and may know an organization you could contact). You might also try the Muscular Dystrophy Association as well.

Good luck and remember that you are not alone in this, and you will find people who can talk about it.

Tags

　　Narcotics 　　Narcolepsy 　　Nail Diseases 　　Myositis 　　Myopia 　　Myopathies 　　Myocardial Infarction 　　Myeloproliferative Disorders 　　Myelodysplastic Syndromes 　　Myasthenia Gravis 　　Muscular Dystrophy 　　Muscle Strain

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