Together We Will Connect

DTRF International Virtual Community Networking Event (Virtual via Zoom)

Saturday, September 24
8:30am ET
2:30pm CEST | 7:30am CDT | 6:30am MDT | 5:30am PDT | Time zone converter

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Desmoid tumors are extremely rare. We’ve heard many times that our annual events provide opportunities for patients to feel that they’re not battling this disease alone. We’ve heard patients say that our events were the first time they’d ever met someone else who truly “gets it”.   

Join us virtually on Zoom for this 90-minute networking event, which will be produced in partnership with the following desmoid tumor patient advocacy organizations:  Sachin Sarcoma Society (in India), Desmoide Brasil (Brazil) and Contactgroep Desmoid (Netherlands). Facilitators, including American desmoid survivor, F.A.P. survivor, and patient advocate, Dakota Fisher-Vance, will guide the discussion and provide breakout groups based on language and location. This is also a chance to connect personally, one-on-one, with other patients and care partners.

Learn more about other Together We Will Virtual Weekend events at dtrf.org/weekend.

Remarks from other community members about past DTRF virtual networking events:
  • “The interaction with other patients and caregivers was a great experience for me as I was diagnosed December 2020. It was heartwarming to be able to talk about desmoid with others that understand what you are going through.”
  • “It was so amazing connecting with people. I’m newly diagnosed, and I learned so much from just talking to other patients.  It was really incredible, and I will absolutely participate in future sessions and try to get my caregiver to join separately as well.”
  • “It was so encouraging to hear about each of our journeys, especially that of the caregivers. I’m inspired and refreshed. Thank you so much for organizing this event.”
Our event faciliatator

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.

Networking Event Partners

     

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