UMDF Issues Response to Congressional 21st Century Cures Act RFI
UMDF Issues Response to Congressional 21st Century Cures Act RFI DOWNLOAD this document (PDF)...
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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...
Read moreAdvocacy 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...
Read moreAn Update from UMDF Board Chair Dr. Alicia Palladino
Dear UMDF Community, For those of you who had the opportunity to join more than 700 patients, family members, clinicians, and researchers at...
Read moreAdvocacy 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...
Read moreUMDF Names Award Winners for 2024
From Left to right: Fatema Shikora with Jennifer Chickering of Tisento Therapeutics, Jared Goettemoeller with Dr. Tyler...
Read morePowerhouse Podcast #31: Run4Raley
Powerhouse Podcast #31: Run4Raley The July 2024 Powerhouse Podcast features Leslie Kirby, co-founder of Run4Raley, as the Kirby family is...
Read moreAn Announcement from UMDF Board Chair Dr. Alicia Palladino
Dear UMDF Community: As you know, Brian Harman has been the UMDF President and CEO for the past six years, driving numerous critical...
Read moreAsk the Mito Doc – June 2024; Q&A
Ask the Mito Doc – June 2024 Q&A All answers today are based on personal experience of the participants. As always, please...
Read moreAsk the Mito Doc – May 2024; Q&A
Ask the Mito Doc – May 2024 Q&A All answers today are based on personal experience of the participants. As always, please consult...
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