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: Advocacy Invite: FDA to Host Patient and Care Partner Perspectives on Safety Considerations for Approved Gene Therapy Treatments for Rare Diseases on Friday, September 20Dear UMDF Community, For those of you who had the opportunity to join more than 700 patients, family members, clinicians, and researchers at...
Read: An Update from UMDF Board Chair Dr. Alicia PalladinoLast week, UMDF hosted a congressional briefing with the U.S. House of Representatives’ Mitochondrial Disease Caucus, which featured speakers...
Read: Advocacy Update – July 2024: Watch Mito Caucus Briefing, A Win with NIH Language, and moreFrom Left to right: Fatema Shikora with Jennifer Chickering of Tisento Therapeutics, Jared Goettemoeller with Dr. Tyler...
Read: UMDF Names Award Winners for 2024Dear UMDF Community: As you know, Brian Harman has been the UMDF President and CEO for the past six years, driving numerous critical...
Read: An Announcement from UMDF Board Chair Dr. Alicia PalladinoUMDF Advocacy Update – Dec. 2023 The House is scheduled to be out of session until January, while the Senate is scheduled to remain in...
Read: Advocacy Update – May 2024: FAA Reauthorization, Telehealth, Accelerating Kids’ Access to Care Act, and moreThe United Mitochondrial Disease Foundation (UMDF) is pleased to announce a new grant of $200,000 awarded to Suraiya Haroon, PhD, within...
Read: UMDF Announces Inaugural Venture Philanthropy Investment: The Mito Fund Invests $500k in Pierrepont Therapeutics, Inc. to Help Move a Mitochondrial Disease Therapy ForwardResearch Update from 2023 accelerators Runner-Up Jonathan Dietz, PhD In June 2023, Jonathan Dietz, PhD presented his research...
Read: Research Update from 2023 accelerators Runner-Up Jonathan Dietz, PhDUMDF Advocacy Update – Dec. 2023 The House is scheduled to be out of session until January, while the Senate is scheduled to remain in...
Read: Advocacy Update – February 2024: Redefining “Rare” For the World, Funding for 2024 & BeyondThe United Mitochondrial Disease Foundation (UMDF) is pleased to announce a new grant of $200,000 awarded to Suraiya Haroon, PhD, within...
Read: UMDF Family Impact Funds Award $200k Grant to CHOP to Explore Potential Single Large-Scale mtDNA Deletion Syndrome Treatments