Join the DTRF Patient Advocacy Committee
Patients drive our purpose and thus their voices need to be at the forefront at all times. We need desmoid tumor patients and caregivers like you to ensure we are best serving our community.
We formed the Patient Advocacy Committee (PAC) to include patient and caregiver voices in our work and encourage direct collaboration with the Foundation.
PAC members work with The DTRF in the following areas according to their interest:
- Connecting the patient voice in ad-hoc requests to engage with industry or government groups
- Guiding the DTRF on the needs of patients and caregivers by providing insights on their journeys from the patient and caregiver perspective
- Assisting with fundraising
- Shaping and expanding patient and caregiver engagement
- Advising on topics of interest for patient meetings and networking events
Expectations
PAC members attend quarterly virtual meetings, participate in subcommittees and other opportunities for patient engagement, and are active in promoting our events and messaging via social media. We ask for a 1-year commitment.
The PAC is a dynamic committee that we engage with new projects and opportunities as they arise.
Committee member recruitment is currently closed for the June 2023 – June 2024 term and will open again in April 2024. If you are interested in participating, please fill out the form below.
Recruitment will begin again in April 2024. If you have any questions about this committee, please email us at PAC@dtrf.org.
