U.S. Research Budget Advocacy Successes

Rebecca King and Congresswoman Chrissy Houlahan

HF Board Member Rebecca King meeting with Congresswoman Chrissy Houlahan

Good news! The U.S. 2020 budget is passed, and research funding received strong support from our legislators. The highlight of the medical research budget is $41.7 billion for NIH. Advocates from the Hypersomnia Foundation and from hundreds of other disease communities are looking forward to the new scientific insights from these investments. Find out the details AND how you can get involved!

There are many positive developments for the medical and science research advocacy community in these bills, including:

  • A significant funding increase of $2.6 billion for NIH, paving the way for faster medical progress and more lifesaving, job-producing R&D.
  • An increase of $636 million for the CDC, including new resources to strengthen the agency’s 24/7 disease tracking capabilities.
  • An increase of $91 million for the FDA to assist with its ever-growing responsibilities, including prioritizing approval of new medications for rare diseases such as IH.
  • A ten-year reauthorization for PCORI (Patient-Centered Outcomes Research Institute) to continue producing much-needed, life-saving evidence about what interventions work best for patients and their caregivers.

The NIH increase will support several major research initiatives, including $500 million for the Brain Research through Application of Innovative Neurotechnologies (BRAIN) initiative. The BRAIN initiative is aimed at revolutionizing our understanding of the human brain. As IH, narcolepsy and KLS are disorders of the brain and central nervous system, it is likely that the new discoveries coming out of the BRAIN initiative will someday lead to insights into our disease.

The HF Advocacy Team actively advocated for all of these wins by emailing and meeting with their elected representatives. If you would like to join our legislative advocacy efforts, please email Rebecca King at . Sharing your personal story and adding your voice to the thousands of others in the rare disease community is one of the best ways to encourage meaningful change.

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