The Patient and Family Advisory Council (PFAC) for the Children's Rare Disease Collaborative (CRDC), was established in September 2025 following the inaugural Pediatric Rare Disease Summit earlier that year.  PFAC’s mission is to ensure that patients and families directly shape the CRDC’s future of providing research-informed care and genetic diagnoses that enable personalized treatments, including precision medicine and targeted therapies.  Co-developed by dedicated family representatives in partnership with CRDC leadership, PFAC recognizes that families facing rare disease diagnoses often experience isolation, uncertainty, and social and emotional strain. PFAC's 30-member patient, family, and caregiver representatives from across the global research community have partnered with the CRDC to organize annual summits, expand digital outreach through social media, and identify critical areas of support for families navigating pediatric rare disease care. Committed to building a compassionate social and emotional support network, PFAC facilitates peer-to-peer connections, collaborative programs, inclusive forums, and direct community engagement to address the multitude of challenges that rare disease families face.

 

PFAC Leadership: Lucia Huerta, Ellie Hammer, Krista Kovalcin-Plotkin

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Interested in joining or learning more?

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If you are a patient or family member involved in rare disease research through the CRDC, we invite you to connect with the PFAC, share your perspective, and help shape our priorities. Sign up on the link here or use the QR code below to stay informed on how to get involved! Also make sure to check out the Rare Disease Patient Families Facebook Group and Instagram page to stay connected!

 

Rare Disease Patient Families and Caregivers at BCH Facebook Group

 

Rare Disease Patient Familiies at BCH Instagram Page

CRDC PFAC Interest Form

  

CRDC Patient Outreach Interest Form

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