Become a DTRF Ambassador! DTRF Ambassadors are volunteers who extend the ability of the Desmoid Tumor Research Foundation (DTRF) to serve patients and caregivers across the U.S., and help to strengthen and support the desmoid tumor patient population in their local communities.
NOTE: After a program agreement, ambassadors will begin the onboarding process with a DTRF team member. The following list of responsibilities may change based on the needs of the DTRF community.
Responsibilities can include:
Patient and Caregiver Support
- Using your experience with desmoid tumors to provide empathy and compassion for others on their journey
- Connect patients and caregivers with local support organizations, healthcare professionals, and resources* that can assist in their desmoid tumor journey
*DTRF does not directly endorse, support, or recommend any products or services.
Educational Materials and Resources
- Become educated about the programs and resources the DTRF makes available to the desmoid tumor community
- Engage virtually (or in-person) with patients by sharing DTRF resources, services and educational materials
- Gather information on local helpful patient resources to contribute web content to the DTRF knowledgebase
Medical Outreach
- Assist DTRF staff in promoting and distributing educational materials to doctors and medical centers
- Identify local doctors treating desmoid tumors for possible inclusion in the DTRF’s Doctor Directory (internal document)
- Encourage local doctors and medical centers to refer desmoid tumor patients to the DTRF for information and support
Optional activities:
- Host local or regional informal meet-ups for patients and caregivers
- Work together with DTRF staff to plan regional community conferences
- Identify potential funders or major donors who may be interested in supporting the DTRF’s mission
Expectations
- Take initiative to become educated about the programs and resources the DTRF makes available to the desmoid tumor community.
- Maintain regular contact with a designated DTRF staff member, and keep them informed of activities performed on behalf of DTRF.
- Respect the privacy of patients and caregivers; do not share patient identities or health information with anyone other than your designated DTRF staff contact.
- Clearly represent your role as a volunteer for the DTRF when communicating in your capacity as an Ambassador.
- Never attempt to give medical advice or opinions on how a patient should be treated; instead, share facts or educational resources and allow them to make their own decisions.
- Act in the best interest of the DTRF by operating with integrity and high ethical standards, using your best judgement to avoid any activities that could create risk or reputational harm to the Foundation.
- Proactively disclose to DTRF staff any potential personal or professional conflicts of interest.
- Maintain confidentiality of non-public information obtained from the DTRF.
- Willingly accept training, coaching, and feedback from DTRF staff.
Support
The DTRF staff will support and direct the work of Ambassadors in the following ways:
- Work with Ambassadors to identify activities based on the Foundation’s goals as well as the needs and opportunities of the Ambassador’s local community
- Provide DTRF materials and collateral as needed
- Provide training and oversight appropriate to the Ambassador’s activities
- Provide introductions to patients, families, and medical professionals, as appropriate
- Handle logistics of DTRF professional meetings, as needed
