UMDF Connect
Advocacy Update – September 2022: Three Things You Should Ask of Congress as We Wrap Up World Mitochondrial Disease Week
This week, as part of World Mitochondrial Disease Week, UMDF President & CEO Brian Harman caught up with the offices of several members of Congress to talk about mitochondrial disease and the support we need from the federal government. We wrapped up each call...
UMDF Marks World Mitochondrial Disease Week, September 18 – 24, 2022
This coming week, September 18 – 24, marks World Mitochondrial Disease Week. It provides a time for the entire mito community to share our joys, our sorrows, our hopes, and our fears. It’s a week when we can reflect on all we’ve collectively accomplished, while...
UMDF Brings Awareness, Support for Patients and Families on TK2d Tuesday — Sept. 13, 2022
This Tuesday, September 13 is TK2d Tuesday, a day to bring awareness to a rare genetic mitochondrial disease, Thymidine kinase 2 deficiency. It’s estimated up to 2,700 people in the United States are living with TK2d. We thank the many patients, families,...
Advocacy Update – August 2022: The Inflation Reduction Act, Telehealth Extension, FY 2023 Appropriations and more.
Congress Passes the Inflation Reduction Act Congress ended a busy work period after passing the Inflation Reduction Act (IRA) over the weekend. Congress has now adjourned for August recess. The Senate returns on September 6, and the House returns on September...
Alicia Palladino Named Board Chair for The United Mitochondrial Disease Foundation
(Pittsburgh, PA – July 20, 2022) The United Mitochondrial Disease Foundation (UMDF) today announced Alicia M. Palladino, JD, PhD, an intellectual property attorney in Troutman Pepper’s Health Sciences Practice Group, has been elected chair of the UMDF Board of...
Cyclerion Therapeutics to Discuss CY6463 MELAS Clinical Data at a Webinar Hosted by UMDF
Cyclerion Therapeutics to Discuss CY6463 MELAS Clinical Data at a Webinar Hosted by United Mitochondrial Disease Foundation Company to discuss positive topline and additional clinical data for CY6463 in MELAS patients Mitochondrial disease clinician-researcher,...
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)...