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Review for International Rett Syndrome Association, Cincinnati, OH, USA

Rating: 5 stars  

Our daughter is 35 and has Rett syndrome. We finally received the diagnosis when Heather was 10 years old. When we reached out to other families it gave us hope and strength to be part of something working to find a treatment and cure. We have been advocating, educating and spreading awareness of Rett syndrome ever since. It is great to be able to meet and talk to other families as they learn about their daughter’s diagnosis and we all help each other get through this new adventure. IRSF has been our connection for support and education for over 25 years.

Role:  Volunteer