MPPS

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My daughter has been diagnosed with Megalencephaly Polymicrogyria Polydactyly syndrome. She is the 7th in the world to be diagnosed. There are 2 families in the UK with children who have the same syndrome. I'm trying to contact these families but to no avail. Does anyone know of any families with children with the same condition? There is also a family in China and Bahrain who have children with MPPS? I hope someone can help me. Thanks

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