UMDF Connect
UMDF Cosigns Letter to HHS Urging Preservation of Federal Newborn Screening System
Ask the Mito Doc – May 2025; Q&A
Ask the Mito Doc - May 2025 Q&A All answers today are based on personal experience of the participants. As always, please consult your personal physician prior to taking any action.Ask the Mito Doc - May 2025: Mitochondrial Disease and Biorepositories - Why...
Ask the Mito Doc – April 2025; Q&A
Ask the Mito Doc - April 2025 Q&A All answers today are based on personal experience of the participants. As always, please consult your personal physician prior to taking any action.Ask the Mito Doc - April 2025: Integrating Physical and Emotional Pain...
Ask Your House Representative to Support Mito Research Funding in 2026 Appropriations
UMDF Partners with COMBINEDBrain to Develop a Mitochondrial Disease Biorepository
UMDF has partnered with the nonprofit COMBINEDBrain to develop a mitochondrial disease biorepository hosted on mitoSHARE, UMDF's patient registry. Patients with any form of a genetically confirmed mitochondrial disease can now participate in the biorepository by...
UMDF Cosigns Letter to Congressional Leaders Supporting Accelerating Kids’ Access to Care Act
Ask the Mito Doc – March 2025; Q&A
Ask the Mito Doc - March 2025 Q&A All answers today are based on personal experience of the participants. As always, please consult your personal physician prior to taking any action.Ask the Mito Doc - March 2025: Clinical Trial Readiness & Clinical...
A Message from UMDF on the Passing of Prince Frederik
We at UMDF wish to share our deepest condolences with the family of Prince Frederik, who passed away at age 22 from the mitochondrial disease POLG earlier this month. As the founder of the POLG Foundation, Frederik's journey was on full display to the world. Rather...
Advocacy Action: Ask Congress to Oppose 57% Cut to Congressionally Directed Medical Research Programs
Updated 3/12/25, 11amLast night, the House approved the continuing resolution -- including the 57% CDMRP cut -- to fund the government through September 30 with a final vote of 217-213. The measure still needs to pass the Senate, however, where it will need bipartisan...
April 2025 Newsletter: New Mito Biorepository, MitoMed Highlights, Medicaid Survey Results, and More
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