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Walter E. Washington Convention Center

Jun 15, 2025 7:00 AM - Jun 19, 2025 3:00 PM

801 Allen Y. Lew Place, NW, Washington, DC 20001-3614, USA

DIA 2025 Global Annual Meeting

Rare but Real: Navigating Rare Disease Product Development and Market Access Challenges

Session Chair(s)

James  Valentine, JD, MHS

James Valentine, JD, MHS

Director

Hyman, Phelps & McNamara, PC, United States

Experts representing industry, non-profit, research, regulatory, and payor perspectives will explore key hurdles and solutions to rare disease treatment development, from recruitment and diagnosis to late-stage development and access after accelerated approval.

Learning Objective : Identify hurdles and solutions to clinical trial recruitment, including early diagnosis and newborn screening; Identify approaches to patient stratification, disease understanding, and novel biomarkers, while de-risking late-stage development in competitive and high-failure landscapes; Examine challenges of market access and pricing after accelerated approval, and gain insights into addressing payer-specific concerns to ensure equitable access.

Speaker(s)

Anish  Bhatnagar, MD

Panelist

Anish Bhatnagar, MD

Soleno Therapeutics Inc, United States

Chief Executive Officer

Philip (P.J.)  Brooks, PhD

Panelist

Philip (P.J.) Brooks, PhD

National Center for Advancing Translational Sciences (NCATS), NIH, United States

Deputy Director, Division of Rare Diseases Research Innovation

Matthew  Klein, MD, MS

Panelist

Matthew Klein, MD, MS

PTC Theraputics, United States

CEO

Kim  Quaintance-Lunn

Panelist

Kim Quaintance-Lunn

Alexion, United States

Vice President, Head of Regulatory Science and Execution

Jamie  Sullivan, MPH

Jamie Sullivan, MPH

EveryLife Foundation for Rare Diseases, United States

Director of Public Policy

Kerry Jo  Lee, MD

Panelist

Kerry Jo Lee, MD

FDA, United States

Assoc. Dir. for Rare Diseases; Program Manager, Accelerating Rare Disease Cures

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