SHWACHMAN DIAMOND SYNDROME FOUNDATION INC
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Mission Statement
We are dedicated to financially supporting and advocating for research towards curative therapy for all patients. Our worldwide mission revolves around educating and empowering individuals and their families affected by Shwachman-Diamond Syndrome. We are devoted advocates for the community, working tirelessly to raise awareness and support. Furthermore, we participate in an online platform where patients can share experiences and connect with other families.
About This Cause
Shwachman-Diamond Syndrome (SDS) is an ultra-rare and highly complex bone marrow failure disease. The exact incidence of SDS is unknown, but it is thought to be as rare as 1 in every 150,000 live births. There are about 400 SDS patients in the United States, but through social media, we are aware of over 700 patients worldwide. As with any rare disease, most patients do not have access to knowledgeable physicians, nor have they ever met someone with the same disease. Shwachman-Diamond Syndrome Foundation (SDSF) feels it is imperative to educate and support patients so that they can optimize their health and eliminate feelings of isolation.