Rachelle Cook

Rachelle Cook

Community Manager

At the age of 15, Rachelle was diagnosed with catecholaminergic polymorphic ventricular tachycardia (CPVT), a congenital heart arrhythmia condition. At the time of her diagnosis, there was minimal patient information and no patient support groups. Rachelle founded a support group that now has more than 600 members from all around the world. Based on her experiences as a patient with a rare disease, she has consulted for several firms on the patient journey, gene therapy, and clinical trial design. Rachelle graduated from the University of Alabama with a bachelor’s degree in human performance with a focus on adaptive sports. She earned a master’s degree in rehabilitation science and technology from the University of Pittsburgh, where she also worked as a pre-doctoral research Fellow. Rachelle currently volunteers for multiple organizations, including Autumn Trails Stables, the Universal Design Project, and the SADS Foundation.