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

11/19/25 2:30 - 3:30PM ET - Alexandria, VA and Online via Zoom - Members Meeting Virtual Session

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

Elise Hoover joined the Foundation for Sarcoidosis Research in May of 2024. She is a strategic leader with a decade of experience in rare disease research initiatives and national collaborative partnerships. As VP of Research, she convenes clinicians, researchers, patients and their families, and other stakeholders to elevate FSR’s research agenda and the initiatives that support acceleration of sarcoidosis research discoveries.

Elise is dedicated to supporting the researcher pipeline to encourage collaboration and mentorship between established researchers and younger investigators, addressing the unmet needs in the diagnostic journey, and ensuring patient-centered research priorities. She worked at the Polycystic Kidney Disease Foundation for six years, launching both patient registry and centers of excellence programs, and bringing patient stakeholder reviewers into the grant review process. Elise has also held an epidemiology fellowship at the NIH and worked in clinical research coordination for clinical trials.

Elise received her bachelor’s degree from New York University and her master’s degree in public health from Boston University. She currently serves as the Co-Chair of the Health Research Alliance’s Registry and Biorepository Community. Elise lives in Denver, CO.

Speakers

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

Sara DiNapoli, PhD is the Director, Scientific Programs at the Melanoma Research Alliance (MRA), the largest nonprofit funder of melanoma research. In this role, Sara manages MRA’s grants program, which funds research across the globe, with a special interest in rare melanoma subtypes.

Sara earned her PhD in Pharmacology from Weill Cornell Graduate School of Medical Sciences, where she studied the epigenetics of cutaneous melanoma. Prior to joining the MRA, Sara worked at Memorial Sloan Kettering Cancer Center, first as a Grant Writer/Editor and then as a Program Manager developing clinical next-generation sequencing assays. Sara is passionate about advancing the understanding of cancers and improving outcomes for patients, especially for those with rare diseases.

Clare Thibodeaux, PhD, Vice President of Scientific Affairs, Cures Within Reach

Clare Thibodeaux, PhD is the Vice President, Scientific Affairs with Cures Within Reach and has over 20 years of scientific research and philanthropic experience. Clare joined the Cures Within Reach team in November 2015, collaborating with a variety of repurposing stakeholders to catalyze repurposing research opportunities. Clare engages with key opinion leaders, research institution partners, industry representatives, and patient advocates from any disease areas globally to identify, centralize, and vet clinical repurposing research for funding. She is responsible for leading new scientific initiatives at Cures Within Reach, managing Cures Within Reach’s scientific grant outreach and review process, leading the Science Advisory Board, and developing educational events. Clare also serves as a grant/program reviewer for a variety of organizations, presents at numerous conferences and events, and was an Advisory Board member for the Critical Path Institute’s CURE Drug Repurposing Collaboratory. She has led various committees and boards through her previous volunteer work with the American Cancer Society. Clare has advocated with state and federal elected officials concerning cancer related issues and educated the general public through community outreach. Prior to her involvement in the biomedical field, Clare was a market research professional. She holds a PhD in Tumor Biology from Georgetown University and an MBA from George Mason University.

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

Tracey Sikora is Vice President of Research and Clinical Programs at the National Organization for Rare Disorders (NORD), where she leads NORD’s Rare Disease Centers of Excellence network, IAMRARE patient registry platform, and research grant program. Prior to joining NORD, her 15-year career at the University of Pennsylvania included pre-clinical and clinical research in multiple rare diseases, including MPS I, VI, and VII, Duchenne Muscular Dystrophy, Krabbe disease, Niemann-Pick Type C, Familial Hypercholesterolemia, and Castleman disease. In 2022, Tracey co-founded Every Cure, a nonprofit biotech organization dedicated to finding additional uses for existing drugs using novel technical approaches and artificial intelligence.