Boston Children's Rare Disease Collaborative (CRDC) held the first annual Pediatric Rare Disease Summit (PRDS) on April 29th, 2025. The agenda included 9 talks including panel and keynote speakers as well as a poster session including 57 posters representing over 20 rare disease areas. 205 attendees including patient families, caretakers, patient advocacy groups, and physician-scientists all connected for the unifying goal of enhancing access, education, and science for diagnosis and care in rare diseases. As a result of this successful meeting, Boston Children's is forming the CRDC Patient/Family Advisory Group.

For more details on this past conference, click the link "Learn more" below and stay tuned for the next summit coming in 2026!

Contact: PRDS@childrens.harvard.edu

Pediatric Rare Disease Summit - Bridging Science & Care

Date: April 29, 2025, 8:30 am - 6 pm

Location: Merck Research Laboratories, 33 Avenue Louis Pasteur, Boston, Massachusetts

This one day summit at Boston Children's provides an opportunity for patients and families to learn about the scope and breadth of research-informed care at Boston Children's, including inspiring stories of diagnosis to treatment.

Learn more about the Pediatric Rare Disease Summit