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and the agency may not be able to respond to inquiries until appropriations are enacted. Updates regarding government
operating status and resumption of normal operations can be found at opm.gov.
To accelerate research into rare disorders by connecting individuals who are interested in research and who have been diagnosed with a rare disorder (or a disorder of unknown prevalence, or who are undiagnosed) with researchers who study rare diseases.
Child, Adult, Senior
03-10-014 Hypersomnia Foundation National Ataxia Foundation 4p- Support Group CdLS Foundation Hyperacusis Research Limited Kabuki Syndrome Network Kawasaki Disease Foundation Klippel-Feil Syndrome Freedom Leiomyosarcoma Direct Research MSS Support Group ML4 Foundation Stickler Involved People IWSA Soft Bones PWN4PWN aHUS Klippel-Feil Syndrome Alliance American MEN Support Kleine-Levin Syndrome All Things Kabuki WSS Foundation BIVA ABDA PROS Foundation (HLH)
February 15, 2013
October 2, 2017
Sanford Health Sioux Falls, South Dakota, United States
† Study has passed its completion date and status has not been verified in more than two years.