Patient and Rare Disease Advocate
Tasia Rechisky is a Boston University graduate and longtime rare disease advocate. At six months of age, she was diagnosed with Very Long Chain Acyl Coa Dehydrogenase Deficiency (VLCADD), a rare metabolic disorder. She is an active member of the broader rare disease community speaking at several universities and forums to physicians, genetic counselors, medical students and researchers on the impact of living with a rare disease and specifically a fatty acid oxidation disorder. She is a committee member of Rare New England, and a member of the FAOD patient leadership council for Ultragenyx Pharmaceutical.