UMDF Connect
UMDF Announces $100k Award for MEPAN Research, Bringing Total Research Grants Awarded to More Than $1 Million in the Last Year
The United Mitochondrial Disease Foundation today announced a new $100,000 grant to Madhurima Saha, PhD, of the University of Florida, for research related to Mitochondrial Enoyl CoA Reductase Protein-Associated Neurodegeneration (MEPAN), a rare mitochondrial disease...
Advocacy Update – UMDF Co-Signs Letter Supporting PRV Reauthorization
UMDF Co-Signs Letter Supporting Rare Pediatric Disease Priority Review Voucher Reauthorization
Ask the Mito Doc – September 2024; Q&A
Ask the Mito Doc - September 2024 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.Understanding Genetic TestingAsk the Mito Doc Panel Session Moderator: Amy...
A special message from UMDF for World Mitochondrial Disease Week 2024
This coming week, September 16 – 22, 2024, marks World Mitochondrial Disease Week. For me, the week is deeply personal. This year marks twenty years since my infant daughter Natalie was diagnosed with mitochondrial disease. Her battle lasted only a year, but her...
Advocacy Update – UMDF Signs On to Thank You Letter to Senate Appropriations Leadership for Proposed NIH Budget Increase
UMDF Announces Two New Postdoctoral Fellowship Research Grants
On the heels of our traditional research grant funding cycle culminating at UMDF’s annual Mitochondrial Medicine conference this past June, the United Mitochondrial Disease Foundation is proud to announce the funding of two additional postdoctoral fellowship research...
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) >>
Energize the Fight – World Mitochondrial Disease Week 2024
We’re excited to unite with other mitochondrial disease-focused patient advocacy groups across the globe to spread awareness on World Mitochondrial Disease Week, September 16-22, 2024! Together, we can promote understanding and recognition with the hope that...
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...