Lessons in Rare Disease: Funding, Review, and Sustaining Efforts [Fall 2025 HRA Members Meeting]

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Rare disease research faces unique funding challenges—limited donor pools, few established researchers, and persistent gaps in scientific knowledge.This session explores creative funding strategies, from forging partnerships to leveraging non-traditional donors, insights into the proposal review process, and examines how to catalyze progress in under-resourced fields. We’ll discuss how to support both established and new investigators, manage the small but passionate research communities, and connect funders—both within and outside the rare disease space—to impactful opportunities.

Moderator

Elise Hoover, PhD, Vice President of Research, Foundation for Sarcoidosis Research

Speakers

Sara DiNapoli, PhD, Director of Scientific Programs, Melanoma Research Alliance

Barbara Goodman, President and CEO, and Clare Thibodeaux, PhD, Vice President of Scientific Affairs, Cures Within Reach

Tracy Sikora, Vice President of Research and Clinical Programs, National Organization for Rare Disorders (NORD)