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femav8r

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Review for Shwachman-Diamond Syndrome Alliance Inc, Woburn, MA, USA

Rating: 5 stars  

I am an adult with SDS. This non-profit is the only one that represents not only children, but also adults with this devastating disease. This is the only place adults without SDS can meet virtually, and discuss the challenges of dealing with this disease. In addition, this is the only organization addressing challenges of providing the means for researchers to pursue interventions necessary to prolong life, and eventually discover a potential cure.

Role:  Board Member