Bringing families with myasthenia together

Myasthenia (noun): Abnormal muscular weakness and fatigue

Myasthenic (adjective): Person with a myasthenia

Welcome to myasthenickids.org – the support network for myasthenic children, young people and their families.

This website is being developed by a group of parents of children with either Congenital Myasthenic Syndrome, Myasthenia Gravis or Lambert-Eaton Myasthenic Syndrome, with support from Contact a Family and the Myasthenia Gravis Association.

Much of the site is still in development, however, please click here to read about August's MGA Children's Weekend, where families got together for the first time to discuss how myasthenia affects children.

If you wish to contact us please email info@myasthenickids.org
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Congenital Myasthenic Syndrome (CMS) and Baby RB

Parents in Myasthenickids.org are deeply saddened by the case of Baby RB. To read our statement on the decision, on 10 November, of the father to withdraw his opposition to the application to discontinue life support for his son, click here.
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Fundraising

Bringing families with myasthenia together

Congenital Myasthenic Syndrome (CMS) and Baby RB