Nemaline Myopathy Support Group


Useful links

Center for Jewish Genetics

The Center for Jewish Genetics is an educational resource for hereditary cancers and Jewish genetic disorders. Working closely with clergy, health care professionals, support organizations and dedicated individuals, the Center strives to inform community members and raise awareness of available options, including its own subsidized genetic counseling and screening program, so they can plan for a healthy future.

Quick Facts

Disease Frequency: Approximately 1 in 50,000 Ashkenazi Jews
Carrier Frequency: 1 in 108 Ashkenazi Jews

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CMDIR - Congenital Muscle disease International Registry

The Congenital Muscle Disease International Registry (CMDIR), including Congenital Muscular Dystrophy, Congenital Myopathy, and Congenital Myasthenic Syndrome, was created in 2009 to identify the global congenital muscle disease population for the purpose of raising awareness, standards of care, clinical trials and in the future a treatment or cure. The CMDIR registers through the late onset spectrum for all three disease groups. To date, we have over 1,500 registrants from 68 countries.

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Supporting MAP Nemaline

In 2010 Meriel (aged 21 months) was diagnosed with Nemaline myopathy, a very rare muscle condition with no treatment or cure, which changed the lives of her family overnight. Setting up a family fund like MAP Nemaline is a great way to fundraise for Muscular Dystrophy UK to keep our vital research moving forward.

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