PURA Syndrome is a recently discovered and very rare condition. It is so rare that at present ,only about 80 children are affected globaly including our eldest son Christopher. The PURA gene is on chromosome 5. It has a number of different roles, but is known to be particularly important in brain development. This is why problems with the PURA gene are associated with a neurodevelopmental disorder. We would like to raise the awareness of PURA Syndrome and hopefully ask those who are able to make a small donation to the following link. Donating to PURA Syndrome will assist with raising awareness, helping families and much needed research to help better understand the condition. Long term research will assist with better treatments for patients.     http://www.purasyndrome.org/donate

 

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