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Robin Spaur

154 profile views
1 reviews

Review for cureCADASIL, Plainsboro, NJ, USA

Rating: 5 stars  

Cadasil Association has made great strides in getting information out to the public about the little known genetic disease CADASIL. Having attended both the Salt Lake CADASIL Conference in September 2012, and the Boston CADASIL Conference in June, 2013, I have been provided with information on the latest medical progress in diagnosing CADASIL, and the hope of a future patient registry and potential future treatment. The Association is full of dedicated doctors, researchers, and hard working Board members. As a non-symptom CADASIL genetic carrier, the Association provides me and all CADASIL patients and their families with life-changing and timely knowledge that would not be available otherwise.

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

Role:  General Member of the Public