Patient Engagement
Partnership for Phelan-McDermid Syndrome (PMS)
Phelan-McDermid Syndrome Foundation
The PMS Foundation was created with the goal of improving the quality of life of people affected by PMS worldwide by providing family support, accelerating research, and raising awareness. They accomplish this mission through collaborative programming and fundraising efforts.
CureSHANK
CureSHANK funds projects that accelerate treatments for Phelan-McDermid syndrome and SHANK-related disorders. Its purpose is to identify and support projects that overcome critical barriers to successful drug development and to coordinate scientific efforts to improve efficiency and speed in the field.
CLINICAL TRIAL
Mapping the Genotype, Phenotype, and Natural History of Phelan-McDermid Syndrome
PI: Mustafa Sahin, MD, PhD | Natural History Study — NCT02461420 >
Patient Advocacy Group Partner: Phelan McDermid Syndrome Foundation