The "privacy assured" registry helps collect information that will assist in diagnosing and treating mitochondrial disease.

Founded in 1998 by doctors Richard Haas and Robert Naviaux, the MMS represents an international group of physicians, researchers and clinicians working towards advancing education, research and global collaboration in clinical mitochondrial medicine.

mitoSHARE is a worldwide patient-populated registry initiative stewarded by UMDF. The goal of the registry is to advance scientific research using data gathered from patients and families affected by mitochondrial disease.

The Mitochondrial Medicine team at CHOP provides this global resource to facilitate genomic and phenotype knowledge and data sharing and analysis across the global mitochondrial disease community.

People Against Leigh Syndrome, (PALS), was formed in 2013 after William Martin, son of Neil and Lori Martin, was diagnosed with Leigh syndrome, a genetic neurometabolic disorder that can cause deterioration of the central nervous system, including the brain, spinal cord, and optic nerve.

This charity helps to support families with lodging while seeking care in the Philadelphia area. They have locations in Philadelphia, PA as well as Camden, NJ that offer transportation to CHOP. 

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

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

The United Mitochondrial Disease Foundation promotes research for and education about mitochondrial disorders to those affected by them.