Advocacy Center

Join the Fight!

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 Center

Click on the “Take Action” button below to contact your Congressional members around legislation important to the mitochondrial disease community via our Ignite Advocacy platform. 

UMDF ADVOCACY
ACTION ITEM

Encourage Members of Congress to Support the Medical Nutrition Equity Act (MNEA)

Medical Nutrition Equity Act Image

UMDF ADVOCACY
ACTION ITEM

Ask Your House Rep to Join the Mitochondrial Disease Caucus

Mitochondrial Disease Congressional Caucus

OTHER ACTION ITEMS
FROM UMDF PARTNERS

Encourage a “fair, equitable and appropriate review” of
elamipretide by the FDA

Mitochondrial Disease Congressional Caucus

Thanks to UMDF Advocacy Efforts…

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

Advocacy News 

Read up on the latest advocacy news affecting mitochondrial disease patients, research, clinical care and more.

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...

read more

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...

read more

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...

read more

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...

read more

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,...

read more

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...

read more

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.

read more