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Raising Awareness and Changing Policy for National Nonprofit

Raising Awareness and Changing Policy for National Nonprofit

Goal:

Educate on the national organization, how common rare cancers are, the gaps in current therapeutic options and R&D system for rare cancer patients, and the need for policy changes.

Results:

Crafted Strategic Roadmap, including target Members of Congress and agencies based on committee jurisdiction, government programs and funding accounts

Created messaging to educate on rare cancers and how affects all as well as the disproportionate impact on specific populations that suffer the most as cancer patients and where federal policy should change to address these issues

Provided introductions to senior directors at NIH, NCI, NCATS, NIDCR, DoD, OMB and the White House and secured speaking role at Annual NIH Rare Disease Day

Lobbied to include rare cancer in several pieces of legislation, garnered Congressional champions, using targeted messaging, meetings and events on Capitol Hill and with federal agencies and collaborative organizations

For the first time ever, rare cancer was included with specific funding and programmatic requirements within the DoD Peer Reviewed Cancer Research Program and within the FDA Oncology Center

For the first time ever, Congress established NCI-NCATS collaboration to address the rare cancer therapeutic gaps in the market to meet the needs of patients

NIH SBIRs increased focus on rare cancers and worked with NCATS Rare Disease Office on PR efforts to call attention to rare cancer and initiate R&D collaborations

$12.5 million in research funding secured