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SETBP1 Society supports families impacted by SETBP1 haploinsufficiency disorder (SETBP1-HD) and related disorders, focusing on advancing research for effective treatments and improved quality of life.
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Listed on Kisho — Trusted Rare Disease Intelligence
International Prader-Willi Syndrome Organisation
Prader-Willi Syndrome Association (UK)
Prader-Willi Syndrome Association (USA)
International Rett Syndrome Foundation