Advocacy groups

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

www.mitoaction.org

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

www.umdf.org

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

The caregivers

More severe mitochondrial disorders usually appear earlier in life. Find out what it's like to care for a child who has been diagnosed.

Read Cristy's Story