Advocacy Center
Congress needs to hear your voice! The UMDF Advocacy Center is your one-stop page for supporting legislation that helps move mitochondrial disease research, education and support forward.
Read our latest news, sign-up for future congressional visits, or take action today via our UMDF Action Center.
UMDF ADVOCACY
ACTION ITEM
Encourage Members of Congress to Support the Medical Nutrition Equity Act (MNEA)
UMDF ADVOCACY
ACTION ITEM
Ask Your House Rep to Join the Mitochondrial Disease Caucus
of mitochondrial disease research from the U.S. Department of Defense
from National Institutes of Health
members of the Mitochondrial Disease Caucus in the U.S. House of Representatives
total UMDF Advocates pushing for mito-friendly legislation
UMDF November Advocacy Update: What Does a Second Trump Administration Mean for the Mito Community?
With the recent election results, we’ve been getting some inquiries about the impact of a second Trump Administration on mitochondrial disease patients and families. And the truth is, it’s too early to know – but our governmental relations team at Holland & Knight...
UMDF Cosigns Letter to Congress Encouraging End-of-Year Rare Disease Legislative Priorities
UMDF Cosigns Letter to Congress Encouraging End-of-Year Action on Accelerating Kids’ Access to Care Act, Rare Pediatric Disease Priority Review Voucher Program, and More
Advocacy Update – Oct 2024: FDA AdComm Brings Good News, Plus DC End of Year Business
FDA Advisory Committee Deems Potential Barth Syndrome Drug "Effective" Earlier this month, an FDA Advisory Committee voted 10-6 supporting approval of Stealth BioTherapeutics’ elamipretide for treating Barth syndrome, a rare mitochondrial disease that occurs mostly in...
UMDF Reacts to FDA Advisory Committee’s Elamipretide Recommendation
After a full day of testimony that consistently demonstrated the need and efficacy of elamipretide for the treatment of Barth Syndrome, an FDA advisory committee correctly recommended approval of the therapy's new drug application. The committee's decision reinforces...
UMDF’s Comment to FDA’s Advisory Committee Regarding Elamipretide
Read UMDF’s Comment to FDA’s Advisory Committee regarding New Drug Application for Elamipretide in Barth syndrome
Advocacy Update – UMDF Co-Signs Letter Supporting PRV Reauthorization
UMDF Co-Signs Letter Supporting Rare Pediatric Disease Priority Review Voucher Reauthorization
Advocacy Update – UMDF Signs On to Thank You Letter to Senate Appropriations Leadership for Proposed NIH Budget Increase
Advocacy Update – Aug 2024: Help Shape the Legislative Landscape for the Mito Community Through Survey, UMDF Action Items
In a few weeks, we’ll join other mitochondrial disease-focused patient advocacy groups across the globe in marking World Mitochondrial Disease Week, September 16-22, 2024. It’s a time when we can promote understanding and recognition with the hope that increased...
UMDF Issues Response to Congressional 21st Century Cures Act RFI
UMDF Issues Response to Congressional 21st Century Cures Act RFIDOWNLOAD this document (PDF) >>
Advocacy Invite: FDA to Host Patient and Care Partner Perspectives on Safety Considerations for Approved Gene Therapy Treatments for Rare Diseases on Friday, September 20
As part of our commitment to raising patient voices in the regulatory process, we wanted to share an invite from the FDA's Center for Biologics Evaluation and Research (CBER), which is hosting a patient and care partner listening meeting – Patient and Care Partner...
Advocacy Update – July 2024: Watch Mito Caucus Briefing, A Win with NIH Language, and more
Last week, UMDF hosted a congressional briefing with the U.S. House of Representatives’ Mitochondrial Disease Caucus, which featured speakers from across the mito community, including Caucus Co-chairs Rep. Brian Fitzpatrick & Rep. Jim McGovern; Andy Dearth,...
Advocacy Update – May 2024: FAA Reauthorization, Telehealth, Accelerating Kids’ Access to Care Act, and more
Nearly a decade ago, thanks to UMDF advocates, mitochondrial disease became an eligible topic in the Department of Defense’s Peer Reviewed Medical Research Program (PRMRP). The program has since provided more than $70 million in federal funds for mitochondrial disease...
Advocacy Update – February 2024: Redefining “Rare” For the World, Funding for 2024 & Beyond
Rare Disease Day On February 29, we'll join the nearly 300 million affected patients and their loved ones across the world in marking Rare Disease Day. It's a day where we collectively raise awareness and generate support for those living with rare disease -- but...
Advocacy Update – January 2024: New FDA Guidance Encouraging Sign for Rare Disease Patients
In a landmark move, in December 2023, the U.S. Food and Drug Administration (FDA) released a detailed guidance document titled “Rare Diseases: Considerations for the Development of Drugs and Biological Products.” The FDA guidance document is a significant stride...
Advocacy Update – December 2023
UMDF Advocacy Update – Dec. 2023 The House is scheduled to be out of session until January, while the Senate is scheduled to remain in session this week to continue to work toward an agreement on funding for Ukraine, Israel, and US border reform, as well as...
Advocacy Update – November 2023: CMS Changes Definition of Medicare Caregiver in New Rule
Published 11/29/23 President Biden Signs Funding Bill, Averting a Government Shutdown On November 16, President Biden signed the stopgap funding bill passed by the House and Senate. The short-term two-tiered spending bill includes temporary extensions of expiring...
Language Encouraging NIH to “Expand, Accelerate, and Collaborate” on Mito Research Makes it in HHS Appropriations Report
Published 10/24/23; Updated 10/25/23, 4:30 pm ET The wait for a new House of Representatives speaker has ended with Rep. Mike Johnson of Louisiana. With that business handled, looming large is the emergency supplemental spending package for Israel and Ukraine, which...
Marking #WorldMitoWeek Through Advocacy
(Sept. 23, 2023) As we wind down the final days of World Mitochondrial Disease Week, we want to take a moment to thank the UMDF advocates who helped us have over 100 touchpoints with Congress this Wednesday on UMDF’s Virtual Capitol Hill Day. Thanks to your passionate...
UMDF Reacts to Today’s Historic FDA Listening for the Mitochondrial Disease PDCD
(Sept. 8, 2023) Earlier today, the United Mitochondrial Disease Foundation (UMDF) cohosted a listening session with the U.S. Food and Drug Administration (FDA) with fellow advocacy group MitoAction regarding the mitochondrial disease Pyruvate Dehydrogenase Complex...
Advocacy Update – May 2023: What Does the End of the Public Health Emergency Mean for Medicaid?
UMDF Washington Update – May 25, 2023 Debt Limit Negotiations Continue House Speaker Kevin McCarthy (R-Calif.) met with President Joe Biden on May 22, 2023, and had a "productive discussion," but they have not yet reached a deal on raising the U.S. debt ceiling....
Advocacy Update – April 2023: Spring on Capitol Hill
Congress recently returned from its two-week spring recess, kicking off a busy work period leading to the Memorial Day recess. This week, four House committees held health-related hearings, and the Senate HELP Committee is expected soon to take up Pharmacy Benefit...
Advocacy Update – March 2023: Federal Appropriations 101 and Why Advocacy Matters for Mito
Every year, UMDF, with help from the Congressional Mitochondrial Disease Caucus (co-chaired by Reps. Fitzpatrick (R-PA) and McGovern (D-MA) work to educate Congress on federal funding priorities for mitochondrial disease. Specifically, we advocate...
Advocacy Update – February 2023: Could ARPA-H Change the Research Landscape for Rare Diseases?
For many years, UMDF has worked to encourage greater mitochondrial disease research funding through the National Institutes of Health (NIH). And we have also worked to direct mitochondrial disease research funding through the Peer Reviewed Medical Research Program of...
Advocacy Update – January 2023: What Does 2023 Hold for Mito Advocacy?
Year-End Advocacy Success Recap 2022 ended well for UMDF, thanks to the activism of UMDF members, with the final federal funding bill passed and signed by President Biden on December 29th. As mentioned last month, the bill included Department of Defense (DoD) funding...
Advocacy Update – December 2022: Mito Research Funding Looks Headed for Renewal in Newly Unveiled Funding Bill
On Tuesday, December 20, 2022, lawmakers unveiled their long-awaited $1.7 trillion government funding package. The package includes 12 appropriations bills, including the Defense Appropriations bill. Thanks to our advocacy efforts, mitochondrial disease continues to...
Advocacy Update – September 2022: Three Things You Should Ask of Congress as We Wrap Up World Mitochondrial Disease Week
This week, as part of World Mitochondrial Disease Week, UMDF President & CEO Brian Harman caught up with the offices of several members of Congress to talk about mitochondrial disease and the support we need from the federal government. We wrapped up each call...
UMDF Marks World Mitochondrial Disease Week, September 18 – 24, 2022
This coming week, September 18 – 24, marks World Mitochondrial Disease Week. It provides a time for the entire mito community to share our joys, our sorrows, our hopes, and our fears. It’s a week when we can reflect on all we’ve collectively accomplished, while...
Advocacy Update – August 2022: The Inflation Reduction Act, Telehealth Extension, FY 2023 Appropriations and more.
Congress Passes the Inflation Reduction Act Congress ended a busy work period after passing the Inflation Reduction Act (IRA) over the weekend. Congress has now adjourned for August recess. The Senate returns on September 6, and the House returns on September...
Advocacy Update – May 2022: CDER Launches Program to Speed Development of Rare Disease Treatments
The Food and Drug Administration’s (FDA) Center for Drug Evaluation and Research (CDER) announced the launch of the Accelerating Rare disease Cures (ARC) Program. CDER’s Rare Diseases Team manages the ARC Program. The ARC program’s mission is to speed up the...
Advocacy Update – April 2022
White House Releases Fiscal Year (FY) 2023 Budget Request - Big Proposed Increases for Research On Monday, March 28, 2022, President Biden released his proposed fiscal year (FY) 2023 budget. The president’s budget request starts the Congressional budget process. The...
Advocacy Update – March 2022
Omnibus Bill Includes 151-Day Extension of Telehealth Waivers Earlier this week, President Biden signed a bill to fund the government through September (the fiscal year 2022) and send humanitarian aid to Ukraine. The bill also included several health priorities,...
UMDF’s 2022 Congressional Outlook
United Mitochondrial Disease Foundation 2022 Congressional Outlook As it reconvenes, Congress faces a packed agenda in a legislative year that will be shortened by the upcoming midterm elections and remains buffeted by the persistent coronavirus pandemic. The list of...
UMDF Updates Congress on Telehealth
Before the pandemic, telehealth coverage was limited in scope. However, the Centers for Medicare & Medicaid Services (CMS) and Congress expanded coverage to encourage broad adoption of telehealth for the duration of the public health emergency. Accordingly, we have seen an exponential increase in telehealth.
Powerhouse Podcast Episode #1 – A Conversation Adult Patient Brandon Leach
Powerhouse Podcast Episode #1 UMDF President and CEO Brian Harman and Science and Alliance Officer Dr. Phil Yeske debut the Powerhouse Podcast with a conversation with Brandon Leach. Brandon is a resilient young adult patient navigating mitochondrial disease, college...