About MitoAction

We are a member organization of patients, family and friends living with or caring for individuals with mitochondrial disease. Joined together with clinicians from Mass General Hospital, Boston's Children's Hospital, and Tufts-NEMC we hope to improve the lives of people affected by mitochondrial disease. To share our information with others please download our brochure here.

Our Mission

The Mission of MitoAction is to give patients, family and friends living with or caring for individuals with mitochondrial disease the ENERGY to:

Support families and patients affected by mitochondrial disease through a readily available network of genuine and caring parents, spouses, and professionals who all share the same focus: Helping others to navigate the daily and often difficult journey associated with a mitochondrial disease diagnosis

Educate the general and medical community, patients, families, schools about recognizing mitochondrial disease and strategies to give Mito patients the optimum potential to participate in and enjoy their life

Advocate by empowering families to be involved and educate and support others; promote realistic standards of care and practice recommendations for primary care physicians, pediatricians, teachers, nurses, therapists, coaches, and others in the Mito patient’s community

Our Goals

E –Educate patients and families as well as the general and medical community about mitochondrial disease.
N –Nurture coordinated care for these patients and families.
E –Empower patients and families to advocate for themselves.
R –Reach out for recognition and support for this disease.
G –Gain financial support to achieve and sustain the mission of the program.
Y –Yield creative ideas and opportunities to achieve our mission and meet the needs of this patient population.

Our Vision

It is the vision of the Mitochondrial Disease Action Committee to empower and educate the community at large to embrace and support individuals and families who are living with mitochondrial disease, and to increase awareness and advocacy efforts about the disease so that every patient has access to specialized care and a network of support and information that improves the journey for all who are affected.