Rally for Rare
Reflecting on a day of unity and progress
Thank you to everyone who joined us for the Rally for Rare conference on February 28, 2025, at the Hyatt Regency Bethesda. Despite the postponement of the FDA- NIH Rare Disease Day conference, our community-led event provided a vital platform for sharing knowledge, resources, and support. Patients, advocates, researchers, healthcare professionals, and more came together to maintain momentum for Rare Disease Day and help advance treatments for rare diseases. From videos of the presentations to slide decks, this page is your go-to resource for all the invaluable materials from the event. We’re so grateful for the incredible support of the community, and we look forward to continuing our collective efforts to make a difference in the lives of those affected by rare diseases.
Expert Insights
Hear from 12 leading experts in the rare disease community who shared insights on patient advocacy, patient-led research, and more.
Knowledge Sharing
Enjoy a comprehensive 8-hour agenda packed with sessions on topics like research funding, patient-led initiatives, and innovations in genetic testing.
Explore Materials
Get access to exclusive videos, slide decks, informational content, and other indispensable resources to continue learning about the rare disease community.
Our Rare Disease Experts
Derek Ansel, MS, LCGC
Vice President, Therapeutic Strategy Lead, Rare Disease
Joanna Reeder
Vice President, Project Management, Other and Rare Diseases
Amy Raymond, PhD, PMP
Executive Director, Therapeutic Strategy Lead, Rare Disease & Cellular and Genetic Medicines
Juliane K. Mills, MS, MPH
Senior Director, Therapeutic Strategy Lead, Rare Disease
Nathan Chadwick
Senior Director, Therapeutic Strategy Lead, Rare Disease
Michael Murphy, MD, PhD
Chief Medical and Scientific Officer
Videos
