DTRF's Patient Advocacy Committee (PAC) - Desmoid Tumor Research Foundation

Join DTRF's Patient Advocacy Committee (PAC)

In May of 2021, DTRF formed a Patient Advocacy Committee (PAC).

Through this initiative, desmoid tumor patients and caregivers will collaborate directly with the DTRF to include the patient voice in our work.
The DTRF PAC will be working directly with DTRF in the following areas:
    • Connecting the patient voice in ad-hoc requests to engage with industry groups
    • Guiding the DTRF on the needs of patients/caregivers by providing insights on their journeys from the patient/caregiver perspective
    • Assisting with fundraising
    • Shaping and expanding patient/caregiver engagement
    • Advising on topics of interest for patient meetings and networking events
Committee member recruitment is currently OPEN for the June 2022 – June 2023 term. Complete this form to participate in a curiosity call to learn more about how you can contribute to our advocacy efforts.
If you have any questions about this committee, please email us at lynne@dtrf.org. Thank you!