United States USA: ME/CFS Outreach to ARPA-H

[Dakota15]

Hey all,

Just sharing an outreach opportunity to the newly formed Advanced Research Projects Agency for Health (ARPA-H - https://arpa-h.gov/) that will get off the ground in 2023 in the US.

Thus far, it seems that ARPA-H is genuinely interested to hear from the American people (
https://twitter.com/i/web/status/1608538655747936263

) on overlooked diseases & health inequities. As we know, ME/CFS has been overlooked and underfunded at the NIH for far too long, so there seems like a real opportunity that ARPA-H could make a difference for us (or at least hope).

The inaugural director, Dr. Renee Wegrzyn, has publicly said that 10-20 Program Managers will start at ARPA-H in 2023. These Program Managers will then focus on these challenges identified.

From what's been shared to me, several researchers in the ME/CFS & Long COVID field have applied for these positions.

If you'd like your voice to be heard & hopefully represented in the Program Manager (PM) positions that are appointed, this form (https://arpa-h.gov/contact/) is super fast & easy to complete that will go to the ARPA-H team.

1. Fill out your basic info (For 'Inquiry Type' on the form, I filled 'General Inquiries.' Of course for 'Affiliation', this is a 'Public' outreach)
2. In the message box, tailor what you'd like ARPA-H to know

Message example: "I am reaching out today to express my hope that ARPA-H will prioritize Program Managers (PM) that will look for solutions with infectious-associated chronic complex diseases such as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Long COVID & POTS"

I thought it may be a tangible way to give feedback to this new program that could make a difference.

- Thanks, Dakota

 

[Hutan]

It does sound interesting
From FAQ:

President Biden proposed the creation of ARPA-H to improve the U.S. government’s ability to speed biomedical and health solutions. On March 15, 2022, the FY 2022 Consolidated Appropriations Act (Public Law 117-103) was signed into law authorizing the establishment of ARPA-H within the U.S. Department of Health and Human Services.

ARPA-H will make pivotal investments in breakthrough technologies and broadly applicable platforms, capabilities, resources, and solutions with the potential to advance areas of medicine and health that cannot readily be accomplished through traditional research or commercial activity.

ARPA-H will draw on and contribute to NIH’s vast knowledge, expertise, and infrastructure, but remain distinct and independent, with its own culture, policies, and processes. ARPA-H is a funding agency and like other ARPAs, will create new capabilities and solve problems through ambitious, well-specified, and measurable programs. The director of ARPA-H reports to the HHS Secretary.