How to Find, Recruit, and Retain Rare Disease Scientists and Clinicians
Gay and Steve Grossman
Gay and Steve Grossman, co-founders of ADCY5.org provide some advice for finding (and retaining) researchers to help patient advocacy groups.
Dyskinesia linked to a mutation in the adenylyl cyclase V gene (ADCY5) is an extremely rare disease and it is only beginning to be understood.
Symptoms of ADCY5-related dyskinesia include episodes of abnormal movements affecting the limbs, face, and/or neck, and these symptoms are exacerbated by anxiety. Affected individuals have normal intellect and life span.