A national strategy to overcome the obstacles that have resulted in a lack of funding for rare cancer research.
Rare cancer comprises approximately 25% of cancers diagnosed annually in the U.S. The Jedi Rare Cancer Foundation commissioned this landscape report to understand why progress in developing therapeutics for rare cancer has not kept pace with advances in treating more common cancers, and to determine what is currently being done to address this need, and what would be required to expand upon and integrate these efforts.
The report contains qualitative data obtained from experts with specialized knowledge in the rare cancer space and identifies a chain of issues related to rare cancer that slow down data collection and research, leading to a lag in the development of therapeutics to treat rare cancer.
A more holistic, interconnected approach encompassing rare cancer research, public policy, education, and advocacy is discussed and breaks down the factors into four broad categories: Research; Biospecimens and Data; Patient-Centered Pathways; and Funding, Management, and Government.
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The Jed Ian Taxel Foundation for Rare Cancer Research | P.O. Box 683501 Park City, Utah 84068
The Jed Ian Taxel Foundation for Rare Cancer Research, Inc. is a 501 (C)(3) Non-Profit Organization, accepting Tax Deductible donations from individuals, corporations, family-advised funds and foundations. Federal Tax ID 86-2610819
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