Why FA Advocates Are So Important

An advocate is an individual who publicly supports a specific cause. Advocates in the rare disease space can be caregivers, family members, friends, or the patient themselves. Including the perspective and lived experience of advocates allows them to contribute to discussions, decisions, and actions that directly impact their lives and promotes a more comprehensive understanding of issues the community faces. 

This is important because the research field increasingly emphasizes Patient-Centered Outcomes Research that involves the advocate at every stage of the research process. The FA Patient Advocacy Program will work to achieve the Fanconi Cancer Foundation’s mission of improving the lives of people affected by FA and associated cancers by creating collaborative partnerships between patient advocates and researchers, clinicians, educational institutions, industry, and government agencies. 

Our Advocacy Goals

• Establish a platform by which the voices of the FA community can be heard and valued.
• Provide training that will empower advocates to effectively engage in advocacy work. 
• Leverage the lived experience and expertise of individuals with FA and their caregivers to ensure research, education, and global FA initiatives are patient-centered, relevant, and impactful.
• Promote respectful, effective partnerships between individuals with FA, their families, and external stakeholders.
• Improve participant and caregiver satisfaction with the overall research experience by engaging advocates to provide input on research design, implementation, recruitment, and dissemination of results.

How to Become an Advocate

The program invites participation from a diverse range of individuals within the FA community, such as adults living with FA, caregivers of those affected by FA, and bereaved family members. If you are interested in applying, please reach out to the program staff for further information or complete an Advocate Application.

Training

The advocates will receive training on the basics of clinical research and tools to optimize communication strategies that best highlight their lived experiences for various audiences. Additional resources and learning opportunities will also be available to advocates based on specific project needs.

What kind of work do advocates do?

1. Partner with researchers and industry groups to provide advice on clinical trial study design, logistics, and participant burden.
2. Serve as ambassadors between the research community and the FA community to assist with recruitment and the dissemination of research findings.
3. Collaborate with legislators and other rare disease organizations to influence state and federal policy initiatives.
4. Engage with federal regulatory agencies as patient representatives, communicating the needs and experiences of the FA community.
5. Share lived experiences to highlight the patient perspective during scientific and educational meetings, as well as fundraising events.

As a researcher or industry professional, how can I connect with FA advocates?

• Complete an Advocate Request form
• Contact program staff: Andrea Ronan at andrea@fanconi.org or 541-687-4658 ext 302.

We wish to extend our gratitude to the Joel Walker Fund, especially Nigel and Ann Walker, for supporting this important program. 

Support and training for FCF advocates is provided in part through a licensed agreement with Living Proof Advocacy, Inc.