Patient Organizations

We are committed to improving the lives of everyone affected by Duchenne through accelerating research to find the cure, improving care and empowering the Duchenne community.

The Champ Foundation supports research toward better treatment and a cure for single large-scale mitochondrial deletion syndromes (SLSMDS), like Pearson syndrome.

Cure Mito Foundation is a patient advocacy group led by the parents of families affected by Leigh Syndrome. Mission of Cure Mito is to unite the global Leigh syndrome community to accelerate patient-centered research, treatments, and cures.

The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.

This is the beginning of a long fight and every obstacle will be thrown in our way. We can not do this alone, we hope you will cheer us on in the way that is right for you.

This site was created by a family affected by LHON. By sharing what we learned as we struggled to cope with LHON, and what we've learned over the years since it first happened, we hope to help make the adjustment process smoother for others.

We support individuals and families affected by Leber’s Hereditary Optic Neuropathy from coast-to-coast, through a wide range of volunteers.

We are a patient-led support group for a rare condition called Leber's Hereditary Optic Neuropathy (LHON).

The Lily Foundation is the UK's leading mitochondrial disease charity and the largest charitable funder of mitochondrial research in Europe.

MEPAN Syndrome is a genetic disease that appears in early childhood. Patients have trouble with voluntary movement and balance, and often develop vision issues. These symptoms worsen over time and can leave patients unable to walk independently, produce speech, and legally blind.

MitoCanada is energizing lives. Our foundation is dedicated to creating a world where all lives are powered by healthy mitochondria. Whether you are currently living with, or are at risk of developing, a mitochondrial disorder, MitoCanada is here to support you on your journey. We rely on the collective energy of the MitoCommunity to reduce the devastating impact of mitochondrial disease and offer hope.

Mito Foundation supports people affected by mitochondrial disease (mito), funds essential research into the prevention, diagnosis, treatment and cures of mitochondrial disorders, and increases awareness and education about this devastating disease.

Advancing education, research, and global collaboration in clinical mitochondrial medicine

Our mission of the NUBPL Foundation is to raise awareness and fund research towards the development of life-saving treatments and a cure for NUBPL, a mitochondrial complex 1 deficiency disorder.

The Society for Mitochondria Research and Medicine, India (SMRM) is a nonprofit organization of scientists, clinicians and academicians. The purpose of SMRM is to foster research on basic science of mitochondria, mitochondrial pathogenesis, prevention, diagnosis and treatment through out India and abroad.

This nonprofit entity is developing a visionary and innovative approach to treat and cure PolG mitochondrial diseases.

The Undiagnosed Diseases Network (UDN) is a research study that is funded by the National Institutes of Health Common Fund. Its purpose is to bring together clinical and research experts from across the United States to solve the most challenging medical mysteries using advanced technologies.