UMDF Connect
A Special World Mitochondrial Disease Week Message from UMDF President & CEO Kristen Clifford
Today marks the official kickoff of World Mitochondrial Disease Week, a time designed to help the public better understand mitochondrial disease – with the hope that increased awareness, attention, and funding will accelerate progress toward effective treatments...
UMDF Co-signs Letter Encouraging Congress to “Act Swiftly” to Reauthorize the Rare Pediatric Disease PRV Program
September 2025 Newsletter: World Mito Week, FDA News, Return of Ask The Mito Doc & Bench-to-Bedside
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UMDF Joins Other Mito Advocacy Groups to Issue Statement and Call to Action Regarding the FDA’s DCA Denial
Sept. 4, 2025 -- Earlier today, Saol Therapeutics shared the U.S. Food and Drug Administration (FDA) has issued a Complete Response Letter (CRL) regarding the company’s application for dichloroacetate (DCA) to treat Pyruvate Dehydrogenase Complex Deficiency...
August 2025 Newsletter: No-Cost Genetic Testing, World Mito Week, FDA Action, Ask the Mito Doc Returns, and more
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Energize the Fight – World Mitochondrial Disease Week 2025
We’re excited to unite with other mitochondrial disease-focused patient advocacy groups across the globe to spread awareness on World Mitochondrial Disease Week, Monday, Sept. 15 to Sunday, Sept. 21 ! Together, we can promote understanding and recognition with the...
Advocacy Action: Ask FDA to Reconsider Elamipretide Decision
Barth Syndrome Foundation, UMDF, and MitoAction leadership were recently notified by Stealth BioTherapeutics that FDA has refused their request to reconsider the elamipretide new drug application (NDA). This refusal to reconsider comes despite a positive Type A...
July 2025 Newsletter: Mito Fund Invests in POLG-Focused Company, MitoMed Grant & Award Winners, mitoSHARE Studies, and more
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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...