Jessica Shriver

Jessica received her undergraduate training in biochemistry Smith College, and has an MA in Theology from Gordon Conwell Theological Seminary, and an MS in Biomedical Ethics from Albany Medical School. She has worked for over ten years as a patient and family advocate specializing in issues that affect the rare diseases community. Her particular focus has been on mistaken medical child abuse accusations, access to appropriate health care and care planning for rare diseases, and palliative and end-of-life care for rare disease patients. Jessica and her husband have two medically complex children born with a rare disease. Their older child died at age five years from the effects of her condition, and their younger child requires a high level of care. As a result, her family has personally experienced many of the challenges faced by patients in the rare diseases community.