North American Mitochondrial Disease Consortium

Join the Contact Registry


Select one of the types of mitochondrial diseases below to join the Contact Registry for that disease:



Also see: What IS the Contact Registry? - Why should I join?

How does the Contact Registry Work?

After you have read and agreed to the authorization, the Contact Registry form will appear on your screen. This form asks you for information such as your (or your child's) name, address, birth date, place of birth, email address, or items relevant to your (or your child's) disorders.

AID: Aminoglycoside-Induced Deafness

Alpers syndrome

Barth Syndrome


CoQ Deficiency

CPEO: Chronic Progressive External Ophthalmoplegia

DAD: Diabetes and Deafness



FBSN: Familial Bilateral Striatal Necrosis

Hepatocerebral disease

KSS: Kearns-Sayre syndrome

Leigh Syndrome


LHON: Leber Hereditary Optic Neuropathy

MELAS: Mitochondrial Encephalopathy Lactic Acidosis with Stroke-like Episodes

MERRF: Myoclonus Epilepsy Ragged-red Fibers

MILS: Maternally Inherited Leigh Syndrome

MNGIE: Mitochondrial Neurogastrointestinal Encephalomyopathy

Mitochondrial DNA Depletion Syndrome

Multiple Deletions of Mitochondrial DNA

NARP: Neuropathy, Ataxia and Retinitis Pigmentosa Syndrome

Pearson Syndrome

SANDO: Sensory Ataxia Neuropathy

Dysarthria Ophthalmoplegia

Complex I Deficiency

Complex II (SDH) Deficiency

Complex III Deficiency

Complex IV Deficiency

Complex V Deficiency

Multiple Respiratory Chain Enzyme Deficiencies

Mitochondrial Disease, Not Classified