Resources for families facing mitochondrial disorders
You may feel all alone, but many others have confronted some of the same challenges you face. Organizations like MitoAction, United Mitochondrial Disease Foundation (UMDF) and the Foundation for Mitochondrial Medicine (FMM) offer information, advice and referrals, facilitate access to clinical trials and provide a community for patients and their families.
For more resources and support, visit these organizations dedicated to mitochondrial disorders:
MitoAction’s mission is to improve the quality of life for children, adults and families living with mitochondrial disease through support, education, outreach, advocacy and clinical research initiatives.
Their website offers educational content as well as information on support programs intended to make living with mitochondrial diseases easier.
Their support programs include:
• Mito411 hotline for one-to-one support for patients, families and caregivers
• Weekly support group teleconferences
• Mito Patient & Family Socials to facilitate connections between families in your area
• Camp opportunities for children with mitochondrial disease
• Monthly Mito Expert Series to discuss the latest in medical care, scientific advances and personal stories
• Podcast library of expert presentations on topics most relevant to mitochondrial disease
• MitoAction Mobile App to help families manage their day-to-day with mitochondrial disease
United Mitochondrial Disease Foundation
UMDF’s mission is to promote research and education for the diagnosis, treatment and cure of mitochondrial disorders and to provide support to affected individuals and families.
Their website offers information for both patients and doctors, as well as ways to take action.
Highlights of their education materials include:
• MitoFIRST Handbook for those newly diagnosed with mitochondrial disease
• Ask the Mito Doc℠ for expert advice on brief questions about mitochondrial disease
• Multimedia library of introductory videos and presentations from annual symposia
• List of current clinical trials and studies for the treatment of mitochondrial disease
• Resources for researchers and clinicians, including Mito on Call for expert advice on diagnosis and treatment of mitochondrial disease
MitoCanada‘s mission is to transform the outlook, quality of life, and sense of community for people impacted by mitochondrial disease through education, awareness, support and transformational patient-focused research.
Their website offers educational content, resources to support those affected by mitochondrial disease, research updates and opportunities for raising awareness and fundraising.
Highlights of their materials include:
• mitoTEST for those suffering from unexplained symptoms that could be related to mitochondrial disease
• mitoLIFE stories, resources and services for those affected by mitochondrial disease
• mitoNET, a collaborative network with the Canadian Mitochondrial Network that brings together researchers, allied healthcare providers, patients, patient advocates, industry, policy makers and allied health organizations to solve the most pressing problems related to mitochondrial disease and dysfunction
• TeamMITO as a platform for awareness and fundraising using the TEAM concept of sport and movement
Barth Syndrome Foundation
The Barth Syndrome Foundation’s mission is to save lives through education, advances in treatment, and finding a cure for Barth syndrome.
Their website offers educational materials, research resources, information for patients as well as caregivers, current news and ways to help.
Highlights of their resources include:
• Educational materials on Barth Syndrome and its diagnosis for patients and caregivers
• Researcher resources and grant program application
• List of clinical trials and studies for the treatment of Barth syndrome
• Opportunities to give to the community