Elise Hoover | 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 Learning Community. Elise lives in Denver, CO.

Appearances:

Day 2 - World Orphan Drug Congress USA 2025 @ 15:00

Panel: Evolving landscape on patient involvement in rare disease HTA

As the EU Health Technology Assessment (HTA) Regulation reshapes the way health technologies are evaluated across Europe, it brings both new opportunities and challenges for patient involvement in the decision-making process. This regulation emphasizes the importance of integrating patient perspectives into the assessment of treatments, which raises key questions about what successful patient involvement looks like. Effective engagement means ensuring that patients’ lived experiences, needs, and priorities are not only heard but meaningfully influence outcomes. A successful model of involvement goes beyond consultation to co-creation, where patients actively contribute to the design and interpretation of assessments. However, the roles of individual patients and patient organizations in this process differ. Individual patients bring personal insights and lived experience, often providing powerful testimony about the real-world impact of treatments. In contrast, patient organizations represent a broader community of patients, advocating for collective interests and ensuring that diverse patient voices are considered. This panel will explore these dynamics, discussing how individual and organizational contributions can complement each other to create a more patient-centered approach to HTA, and the implications this holds for the future of healthcare policy and practice across Europe.

Moderator: Victor Maertens, Government Affairs Director, European Confederation of Pharmaceutical Entrepreneurs (Belgium)

Durhane Wong-Rieger, President, Chief Executive Officer, Canadian Organisation for Rare Disorder & Rare Diseases International