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IAmTSC

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1 reviews

Review for NATIONAL TUBEROUS SCLEROSIS, Silver Spring, MD, USA

Rating: 5 stars  

The TS Alliance is the very best of what a rare disease organization can be. They provide amazing support and educational resources to families like mine (we have a 12 year old son with tuberous sclerosis), AND are actively working through so many avenues to find treatments. Thanks to the Alliance, there is an ongoing clinical trial to test a treatment that can prevent devastating seizures in babies, potentially changing the whole course of their lives. Our family doesn’t feel lucky to have been hit with tuberous sclerosis, but we DO feel tremendously lucky to have such a first class organization helping us and other families like ours - for now, and for the future.

Role:  Client Served