Alexandria, VA – September 17, 2024 – The Center for Innovation & Value Research (the Center) a non-profit research organization committed to advancing the science, practice, and use of health technology assessment (HTA) in healthcare, is proud to announce the launch of Phase II of the Rare Disease Project, an initiative designed to enhance collaboration and raise awareness in rare disease research. Phase II aims to build on the success of Phase I by emphasizing the importance of patient-centered approaches in HTA, offering more robust and inclusive solutions to the challenges faced by those with rare conditions.
A key feature of Phase II is the creation of an Advisory Board, a dedicated group of professionals and advocates with extensive expertise in the rare disease community. The Advisory Board members bring lived experience and professional insights, offering invaluable perspectives to guide the program. Their role is to ensure that the tools and assessments developed in Phase II are deeply rooted in the realities of those directly impacted by rare diseases.
“We are excited to bring together such a distinguished and diverse group of individuals for the Advisory Board,” said Rick Chapman, Chief Science Officer of the Center. “Their insights will be critical in shaping the direction of the Rare Disease Project as we continue to develop patient-centered tools and assessments. Phase II marks a significant step forward in ensuring that rare disease research is more collaborative, inclusive, and aligned with patient needs.”
The Rare Disease Project has been a cornerstone in addressing the complexities of rare diseases affecting millions worldwide.
Please visit the Center’s website for more information on Phase II of the Rare Disease Project and the Advisory Board.
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About the Center for Innovation & Value Research
The Center for Innovation & Value Research is a 501(c)(3) tax-exempt non-profit research organization dedicated to advancing the science and improving the practice of health technology assessment through the development of novel methods and the creation and application of enhanced health technology assessment models to support local decision-making needs in healthcare.
