Justina Pelletier, a Connecticut teenager with mitochondrial disease, was admitted to Boston Children’s Hospital in 2013 on the advice of a metabolic geneticist at nearby Tufts Medical Center so she could see her longtime gastroenterologist, who had recently transferred to Boston. But the hospital — without consulting the Tufts…

Several U.S.-based organizations are launching a network to unify physicians who treat people with mitochondrial disease. The goal is to design better treatment guidelines and clinical priorities, and improve standards of care for patients. The governance board of the Mitochondrial Care Network is looking to work with a diverse…

A leading expert on mitochondrial disease will be among more than 80 speakers at this month’s Rare Disease & Orphan Products Breakthrough Summit in Washington. The two-day event Oct. 16-17 at the Marriott Wardman Park Hotel will be hosted by the nonprofit National Organization for Rare Disorders (NORD).

In honor of Global Mitochondrial Awareness Week, which takes place Sept. 17-23, MitoAction will host a podcast presentation by Dr. Richard Frye on how gut microbiome modulates mitochondrial function. Frye directs autism research at the Arkansas Children’s Hospital Research Institute in Little Rock. A pediatrician and neurologist, he specializes in…

The National Organization for Rare Disorders (NORD), a nonprofit organization representing all patients and families affected by rare diseases, published the Physician Guide to Mitochondrial Myopathies, available free online to medical professionals worldwide. The guide, written by Drs. Michelangelo Mancuso and Michio Hirano, can be…

The Sandra K. Russell Derby Day Benefit, a Kentucky Derby-themed event with a live broadcast of the May 7 race, will raise funds for MitoAction, a nonprofit working to advocate and educate on behalf of the people and families affected by mitochondrial diseases. According to a press release, the…

Summer is over and school is back in session — and so are homework, quizzes, and projects for students. For some children and their parents, however, these are the small things to worry about when returning to school. Children with chronic conditions such as mitochondrial diseases often need to take extra…

MitoAction Energy Walk & 5K, a well-established annual charity event within the mitochondrial disease community, will take place this year on Saturday, September 12. The event is designed to help raise awareness and funding to support patients who suffer from mitochondrial diseases. In addition to a 5K walk, the event meant to be a…

As part of its ongoing effort to improve mitochondrial disease patient care, MitoAction — a nonprofit organization dedicated to improving the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, and clinical research initiatives — in collaboration with the organization’s Medical Advisory Committee…