STAFF

Executive Director – Elissa Taylor-Bustillo

Elissa’s most recent position was at the Greater DC Diaper Bank as their Senior Director of Development and Communications.

Elissa’s commitment to rare disease patient advocacy is deeply personal. After being diagnosed with juvenile diabetes, she founded the Fredericksburg Walk to Cure Diabetes in 2000, which has raised a staggering amount of funding for diabetes research and support groups in the DC-metro region. And after her father was diagnosed with pulmonary arterial hypertension, she went to work with the EveryLife Foundation for Rare Diseases as the organization’s Associate Director of Alliance Development, where she played a pivotal role in elevating the patient voice and advocating for the rare disease community.

Recently, her passion for rare disease advocacy was reignited when her seven-month-old son was diagnosed in utero with a rare disease that affects a mere 0.000102% of live births. These experiences have fueled Elissa’s dedication to the rare disease community and her drive to make a difference.

Elissa currently resides in the DC-metro region with her husband, Fredy, her sons, Brycen and Díon, and their rescue dog, Ace. In her free time, Elissa enjoys running her pro-bono pageant consulting business, gardening, and creating jewelry and clothing from upcycling.

You can reach Elissa at elissa.taylor-bustillo@grin2b.com.