Family Research Ambassador Pilot Program
Children of color remain significantly underrepresented in pediatric rare disease research, biobanks, and clinical studies. This underrepresentation delays diagnoses, limits treatment
options, and widens health disparities. Families often decline participation not from disinterest, but because no trusted, community-based infrastructure exists to guide them safely.
This Program is Currently in Development
Complete our Contact Form and we'll reach out with more information.
Our Approach
We are piloting a first-of-its-kind Family Research Ambassador model. Caregivers of children with rare diseases or autism are trained and compensated to serve as community educators who protect families at the point of research decision-making, not as institutional recruiters.
What Ambassadors Do
• Educate & Empower Co-lead community workshops on rare disease research,
biobanking, patient rights, informed consent, and HIPAA — in accessible,
culturally responsive language.
• Navigate & Protect Support families in evaluating research opportunities independently
so every decision is informed, voluntary, and free from coercion or
institutional pressure.
• Report & Advise Submit ethical concern reports to MCM and provide structured feedback
to research partners, creating an ongoing community voice in researchdesign.
Pilot Scope
• 6–10 trained and compensated Ambassadors in the inaugural Kentucky cohort
• 2–3 community education workshops delivered over 12 months
• 150+ families reached through workshops
• Formal evaluation and scale-up report at 12 months
Why This Matters
This pilot generates the feasibility data, community trust evidence, and evaluation
infrastructure needed to unlock larger federal and foundation funding. It creates a replicable ethical engagement model that strengthens trust between underserved families and research institutions
How You Can Partner
We are seeking institutional, research, and funding partners to launch and evaluate this pilot.
Opportunities include serving as a Community Research Advisory Partner, providing training or venue support, collaborating on ethics content, or co-submitting for NIH CTSA, PCORI, or HRSA funding.
Complete our Contact Form and we'll reach out with more information.