Dakota Fisher-Vance

FAP and Desmoid Tumor Survivor
Patient Advocacy Senior Manager, BioCryst Pharmaceuticals
Co-Founder, Young Adult Cancer Connection

Dakota Fisher-Vance received her B.A. in biology from Bryn Mawr College in May 2011 and a Familial Adenomatous Polyposis (F.A.P.) diagnosis two months later. Reluctantly, she traded in her post-college job for surgical gowns to have her cancerous colon removed. While working abroad in 2013, she noticed another trick up F.A.P.’s sleeve and was diagnosed with a desmoid tumor. If anything, this tumor confirmed that while she hoped to be one in a million, statistically speaking, she’s closer to four in a million.

Patient advocacy fills the void left by her colon and her job title. As Patient Advocacy Senior Manager at BioCryst Pharmaceuticals, she ensures that the voices of rare patients and the nonprofits that serve them are heard and supported. She’s the co-founder of Young Adult Cancer Connection which hosted Cancervention, Philadelphia’s first young adult cancer conference, and the creator of FAPulousTV, the first YouTube Channel dedicated to discussing F.A.P. Her rarity status came in handy while leading the Community Engagement Team for three years at rareLife solutions and on Horizon Therapeutics’ Patient Advocacy team.

The other diagnoses she contends with include an active chocolate addiction and the travel bug.