Tasia Rechisky is a patient, rare disease advocate and writer. Living for the past 30 years with a rare fatty acid oxidation disorder (FAOD) called VLCADD (very long chain acyl-coa dehydrogenase deficiency), she has dedicated her adulthood to advocating and sharing lessons learned with the rare disease community. She started in college giving presentations to science and medical students about life as a patient, helping these students connect their studies to real patients.
Tasia has participated on the Ultragenyx Fatty Acid Oxidation Disorder Patient Leadership Council for several years during which time she helped coordinate a patient group to go to the FDA to testify on a groundbreaking drug. She is a contributor to the “Mighty” and other publications such as, “Mental Health America” on both chronic and rare disease. She is most interested in how to stay psychologically healthy while battling a rare and/or chronic illness. Recently, she testified on both federal and state-level legislations to create a Rare Disease Advisory Council, which now has an active rare disease advisory council. She is a board member and DE&I subcommittee chair of Rare New England, an organization dedicated to bringing together and provide resources to those touched by rare and complex diseases. She is also an advisory council member for Rare Disease Legislative Associates (RDLA).
