History

MitoAction is a nonprofit organization founded by patients, parents, and Boston hospital healthcare leaders who had a vision of improving quality of life for children and adults with mitochondrial disease. The organization began in 2005 as an idea and has evolved from a small New England support group to a dynamic, active service organization helping thousands of patients and families. Despite the growth of the organization, the mission remains the same: to make a measurable impact in the lives of those who are affected by mitochondrial disease.

Originally founded as the Mitochondrial Disease Action Committee, the organization officially changed its name in 2008 to MitoAction.

Mission

MitoAction’s mission is to improve the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, clinical research initiatives and by granting wishes for children affected by mitochondrial disease.

To do this, MitoAction’s goals include:

To improve quality of life for adults and children affected by mitochondrial disease.
To internationally raise awareness about mitochondrial disorders, and their relationship to other diseases.
To provide specific and practical materials that help patients to manage their symptoms
To aggregate and connect the international mitochondrial disease community
To engage pharmaceutical industry working toward therapeutic approaches to mitochondrial disorders.
To create tools which empower patients and caregivers to be advocates for themselves or their children.
To create unique experiential opportunities for adults and children affected by mitochondrial disease.

We strive to offer comprehensive, up-to-date, expert resources, information, and support at no cost to any patient, family, clinician, educator, or member of the community.

We continue to seek multiple ways to offer information such that the resources are accessible and user-friendly for people of all abilities.

We foster relationships with the scientific, academic, research and business community in order to create sustainable support for the mission of MitoAction.

Vision

MitoAction’s vision is to create a community of support that reaches every child, adult, and caregiver affected by mitochondrial disease. Effective awareness and advocacy will guarantee that every patient has access to specialized care and a network of support and information that improves the journey for every individual affected