Rare Disease Report

How to Find, Recruit, and Retain Rare Disease Scientists and Clinicians

NOVEMBER 05, 2016
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.
 
For more information, visit www.adcy5.org


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