News & Press Releases

C-Path and MitoAction Announce Data Sharing Agreement to Support Treatment Development in Mitochondrial Disease

TUCSON, Ariz., June 7, 2022 — Critical Path Institute (C-Path) and MitoAction today announced a joint collaboration to incorporate...

TK2d Patient Voices Elevated at FDA

FOR RELEASE FRIDAY, FEB. 4 AT 11:30AM TK2d Patient Voices Elevated at FDA United Mitochondrial Disease Foundation, MitoAction Champion...

MitoAction and Cure Mito Foundation Announce Partnership with AllStripes Research

This partnership will support multiple Leigh syndrome research projects and fuel development of future treatments. September 19, 2020 —...

MitoAction Announces the Appointment of Three New Board Members

MitoAction announces the appointment of three members to the board of directors. Each new member brings an array of...

Children’s Hospital, Family of Justina Pelletier bring case to court

Justina Pelletier was 14 in 2013 when she landed in a locked psychiatric unit at Boston Children’s Hospital, temporarily a ward...

Mitochondrial Organizations Cooperate to Launch Pilot Phase of The Mitochondrial Network

ATLANTA, January 8, 2018 — The Foundation for Mitochondrial Medicine (FMM), MitoAction, the Mitochondrial Medicine Society (MMS) and the...

MitoAction Joins Patients and Physicians for Rx Access

MitoAction has joined Patients and Physicians for Rx Access, a coalition addressing the issue of insurance cuts to compounded...

Extreme Clinic Makeover 2009

ABC’s Extreme Home Makeover & the Boston Bruins Foundation work with MitoAction for the makeover of the Tufts Medical...

Statement on Autism, Vaccines & Mitochondrial Disease

Mitochondrial Disease Action Committee (MitoAction) Statement on Autism, Vaccines and Mitochondrial Disease www.MitoAction.org March 21, 2008 The recent headlines...

Education Content Now Available

It is with great pride and sincerity that I ask all members, families and friends of MitoAction to please...

A Renewed Commitment & A Fresh Look for MitoAction

Once in a while, you get a great opportunity. Today, we are really excited to show off our new...

Leadership Creed for Mitochondrial Disease

Mitochondrial Disease Leadership Creed for Physicians, Researchers, Patient Advocates and Organization Representatives We believe that mitochondrial disease is a...

MitoAction’s Statement on Nationwide Closures of Mitochondrial Disease Clinics

In the past year, the mitochondrial disease community has witnessed the closing of five clinics specializing in the treatment...

MitoAction Submits Comment to FDA on Proposed Changes to Compounding Pharmacy Regulations

On Monday, July 20, 2015, MitoAction submitted a comment to the FDA on its proposed Memorandum of Understanding concerning...

MitoAction and Care3 Announce Global Innovation Partnership Focused on Mitochondrial Disease

June 12, 2018 (Boston, MA) – MitoAction (www.mitoaction.org), a leading patient advocacy organization within the mitochondrial disease community and...

Advocating Responsibly and Communicating Effectively

Mannie Taimuty-Loomis, MA, LBS and Executive Director of the Jonah & The Whale Foundation, Inc. to learn more and...

Family that lost child to rare disease speaks out on day of recognition

My Daughter’s Rare Disease Was A Mystery For Years. Here’s How We Finally Got A Diagnosis.

Noah, 11, is the only child in the world with this type of rare disease

TK2d Patient Voices Elevated at FDA

CHOP Researchers Develop New Clinical Diagnostic Test to Identify Genetic Sources of Mitochondrial Disease

The Metabolic Genetic Testing Market to witness the mobile health-oriented renaissance

Khondrion completes enrolment in KHENERGYZE Phase IIb trial evaluating sonlicromanol in adult patients with MELAS spectrum disorders