Event Details

Join the Innovation and Value Initiative (IVI) and Everylife Foundation for Rare Diseases to explore the critical role of patient-centered outcomes and health technology assessment (HTA) in advancing rare disease therapy development and access. Our panel of experts and key stakeholders will share groundbreaking insights and recommendations from research that places patients at the center of the discussion. | Rare Disease Initiative

Real Experience

  • Hear firsthand accounts from patients as they discuss the importance of considering patient-centered outcomes in evaluating rare disease therapies.
  • Discover the outcomes identified through this project that illuminate critical factors that truly matter to patients, caregivers, and families affected by rare diseases.

Real Impact

  • Understand the significance of fostering patient-payer dialogues and multi-stakeholder collaborations in driving meaningful change in HTA for rare disease therapy.
  • Gain perspective on these recommendations to prioritize for implementation in HTA and how these actions are poised to shape the future of HTA for rare disease therapies.

This webinar is designed for a diverse audience, including patients, caregivers, payers, employers, policymakers, pharmaceutical professionals, and researchers.


  • Richard Chapman (Chief Science Officer at Innovation and Value Initiative)

    Richard Chapman

    Chief Science Officer at Innovation and Value Initiative

    Rick Chapman, PhD, brings decades of health economics and outcomes research (HEOR) expertise to his role as Chief Science Officer. Chapman was Director of Health Economics at the Institute for Clinical and Economic Review prior to IVI, where he led development of economic evaluations that accompanied rigorous reviews of clinical evidence. Formerly, he was VP of HEOR at Avalere Health. Before that, Chapman was a principal in HEOR at IMS Health, and a research analyst at the Center for Risk Analysis at the Harvard School of Public Health.

    Chapman holds a PhD in health policy with a concentration in decision sciences from Harvard University. He also holds an MS in health policy and management from the Harvard School of Public Health.

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  • Annie Kennedy (Chief of Policy, Advocacy & Patient Engagement at EveryLife Foundation for Rare Diseases)

    Annie Kennedy

    Chief of Policy, Advocacy & Patient Engagement at EveryLife Foundation for Rare Diseases

    Focused on improving health outcomes for people living with rare diseases by advancing the development of treatment and diagnostic opportunities for rare disease patients through science-driven public policy, Annie’s work includes building strong partnerships with policy makers, federal agencies, Industry, and alliances.

    Annie has served within the community for nearly three decades through her roles with Parent Project Muscular Dystrophy (PPMD) and the Muscular Dystrophy Association (MDA). In that time she helped lead legislative efforts around passage and implementation of the MD-CARE Act (2001, 2008, 2014), the Patient Focused Impact Assessment Act (PFIA) which became the Patient Experience Data provision within the 21st Century Cures Act (sec 3001), engagement with the FDA and Industry around regulatory policy and therapeutic pipelines, led access efforts as the first therapies were approved in Duchenne, and engaged with ICER around the development of the modified framework for the valuation of ultra-rare diseases.

    Annie’s community roles include service on the Board of Directors of Cure SMA, the PFDD Works coalition, the Patient Driven Values in Healthcare Evaluation (PAVE) Steering Committee, FasterCures Cures for Life Initiative, the National Health Council’s PCORI Valuation Group, the Innovation and Value Initiative (IVI) Patient Advisory Committee, the National Duchenne Newborn Screening Pilot Program Steering Committee, the Institute for Gene Therapies (IGT) Patient Advocacy Advisory Council, the State Rare Disease Education Initiative (STRiDE) National Steering Committee, and as a member of the NIH National Center for Advancing Translational Sciences (NCATS) Advisory Council and the Cures Accelerator Network (CAN) Advisory Board.

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  • Adrian Kielhorn (Senior Director of Global HEOR Neurology at Alexion)

    Adrian Kielhorn

    Senior Director of Global HEOR Neurology at Alexion

  • Kelly Maynard (President / Founder of Little Hercules Foundation)

    Kelly Maynard

    President / Founder of Little Hercules Foundation

    Kelly launched Little Hercules Foundation on January 1, 2013, after her youngest son, Jackson, was diagnosed with Duchenne Muscular Dystrophy at the age of five. After desperately searching for a treatment for her son only to find none, Kelly decided to leave her career and invest all her time and energy fighting Duchenne. As President of Little Hercules Foundation, Kelly focuses on health policy and its impact on the daily lives of those living with rare diseases. In 2021, Kelly was appointed to Ohio’s Rare Disease Advisory Council by Governor Dewine.
    Prior to Little Hercules Foundation, Kelly served the State of Ohio for over 20 years in various capacities, the most recent being in insurance regulation. She is married with 3 children, 2 grandchildren, 2 rescue dogs, and 2 goats. Kelly lives in Dublin, Ohio, and is a lifelong Buckeye.

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  • Luke Prettol (Lead Benefits Strategy Consultant at AT&T)

    Luke Prettol

    Lead Benefits Strategy Consultant at AT&T

    Luke Prettol is the Lead Benefits Strategy Consultant at AT&T and part of the team responsible for the design of the self-insured health plans. Luke is passionate about equitable healthcare quality and financing innovations to create a high-value benefits ecosystem. Luke holds a BBA in Human Resource Management from Baylor University and is a Certified Employee Benefits Specialist.

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  • Larragem Raines (Director of Research at Innovation and Value Initiative)

    Larragem Raines

    Director of Research at Innovation and Value Initiative

    Larragem Raines currently serves as the Director of Research at IVI, where her expertise in Health Economics and Outcomes Research (HEOR) drives transformative impact. With a strong consulting background, Larragem is the founder of EviGen Advisors, an evidence generation consulting group. She has also played pivotal roles, including leading HEOR and Value Strategy teams at Insightec, a pioneering neuroscience startup, and making substantial contributions to Parexel in their Real-world Evidence and Data Analytics team. Before her time at Parexel, Larragem conducted clinical research at Cincinnati’s Children’s Hospital, focusing on autoimmune genomics and etiology. She is a distinguished alumna of Xavier University, with both a Bachelor’s degree in Economics and Political Science and a Master’s in Science in Health Economics and Clinical Outcomes Research.

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  • Jason Spangler (Chief Executive Officer at Innovation and Value Initiative)

    Jason Spangler

    Chief Executive Officer at Innovation and Value Initiative

    For nearly two decades, Dr. Spangler, IVI’s Chief Executive Officer, has worked in the professional health policy and public health sector with pharmaceutical and non-profit organizations. Dr. Spangler joins IVI from his most recent role as Executive Medical Director and Director and Head of Global HTA Policy Strategy & Engagement for Amgen, Inc.

    Dr. Spangler earned his MD at the Pennsylvania State University College of Medicine in 1998 and his Master of Public Health from Johns Hopkins Bloomberg School of Public Health in 2002. His commitment to public health, preventive medicine, and health equity date back to his medical school residency, during which he served as a medical team leader for free clinics in Costa Rica, a resident coordinator for free clinics for homeless around UPMC, and a clinical educator in the International Medical Corps in Kosovo.

    After serving one year as Chief Resident, Dr. Spangler joined Pfizer Global Pharmaceuticals as a Public Health and Health Policy Consultant. He remained in this role for three years and then moved on to the Partnership for Prevention, where he started as a Managing Senior Fellow and was promoted to Chief Medical Officer until he was recruited to Amgen.

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