Mitochondrial Disease Advocacy Coalition

Mitochondrial disease occurs when the mitochondria – the energy-producing structures inside nearly every cell in the body – fail to convert food and oxygen into the energy cells need to survive. The result can be organ system failure that can rob a person of the ability to see, hear, walk, talk, eat, or breathe. For many, the disease is devastatingly progressive.

The Mitochondrial Disease Advocacy Coalition unites organizations across the mitochondrial disease community to accelerate research, drive policy change, and support a regulatory environment that meets the varied needs and urgency of our community.

The Work We Do

The mitochondrial disease community’s work, even prior to this coalition, has already produced real wins on Capitol Hill – the creation of the Congressional Mitochondrial Disease Caucus, a working Congressionally Directed Medical Research Program (CDMRP) that has delivered $80 million in mitochondrial disease research funding over the past decade, and most importantly, several hard fought wins for approved therapies for mitochondrial diseases. The coalition simply builds on this, helping to streamline and amplify our messaging.

Congressional Mitochondrial Disease Caucus $80M in CDMRP Research Funding Multiple Approved Therapies

Our Three Focuses

Federally Funded Research

We support a robust environment for mitochondrial disease research, championing programs like the Peer-Reviewed Medical Research Program and pressing for stronger NIH language and funding.

Legislative Priorities

We champion legislation that serves mitochondrial disease patients and the related clinical and scientific communities who support them.

Regulatory Environment

We support a healthy regulatory environment for mitochondrial disease therapies so that promising treatments reach the patients who are waiting for them.

Leadership and Funding

The United Mitochondrial Disease Foundation is the convening organization and covers the coalition’s administrative and operational costs. Governance decisions, advocacy positions, and coalition priorities are developed collaboratively by member organizations.