UMDF Connect
Advocacy Update – May 2022: CDER Launches Program to Speed Development of Rare Disease Treatments
The Food and Drug Administration’s (FDA) Center for Drug Evaluation and Research (CDER) announced the launch of the Accelerating Rare disease Cures (ARC) Program. CDER’s Rare Diseases Team manages the ARC Program. The ARC program’s mission is to speed up the...
Advocacy Update – April 2022
White House Releases Fiscal Year (FY) 2023 Budget Request - Big Proposed Increases for Research On Monday, March 28, 2022, President Biden released his proposed fiscal year (FY) 2023 budget. The president’s budget request starts the Congressional budget process. The...
Symposium 2022 – Keeping You Safe
Symposium 2022: Patients and Families - Keeping You SafeUMDF Mitochondrial Medicine 2022 COVID-19 Protocols as of March 25, will include: Attendees must attest to being fully vaccinated per the CDC. Attendees must wear masks within all of the UMDF meeting space. We...
TK2d Patient Listening Session – January 2022
TK2d Patient Listening Session – Monday, January 31, 2022 WHAT IS A PATIENT LISTENING SESSION? Patient Listening Sessions are small, informal, non-regulatory, non-public meetings that allow participants to connect with U.S. Food and Drug Administration (FDA)...
Advocacy Update – March 2022
Omnibus Bill Includes 151-Day Extension of Telehealth Waivers Earlier this week, President Biden signed a bill to fund the government through September (the fiscal year 2022) and send humanitarian aid to Ukraine. The bill also included several health priorities,...
UMDF’s 2022 Congressional Outlook
United Mitochondrial Disease Foundation 2022 Congressional Outlook As it reconvenes, Congress faces a packed agenda in a legislative year that will be shortened by the upcoming midterm elections and remains buffeted by the persistent coronavirus pandemic. The list of...
LSIC Awards Second Round of Research Grants
Leigh Syndrome International Consortium Awards Second Round of Research Grants The Leigh Syndrome International Consortium, a patient-driven research network steered by five of the world’s leading mitochondrial disease patient advocacy groups, is pleased to announce...
UMDF Elevates TK2d Patient Voices at FDA
UMDF Elevates TK2d Patient Voices at FDA Pittsburgh, PA (January 31, 2021) - The United Mitochondrial Disease Foundation (UMDF) – in collaboration with MitoAction and TK2 Cures – led an FDA Listening Session to help regulators understand the vital importance of...
UMDF Launches WCG CenterWatch iConnect Clinical Trial Finder Tool
UMDF Launches WCG CenterWatch iConnect Clinical Trial Finder Tool Specific to Mitochondrial Disease Pittsburgh, PA (December 15, 2021) - The United Mitochondrial Disease Foundation (UMDF) is pleased to announce a new clinical trials finder tool specific to...
LHON Awareness Day – Meet Michael Malecha, Mito Warrior
I learned in 7th grade that the mitochondria are the powerhouse of your cells. I didn’t really understand stand why until August 25, 2014, when I was told I’d be legally blind in 6 to 8 weeks. I found out