Parent & Caregiver

Looking for more ways to connect with families who understand what you're going through? Our trained Support Ambassadors have walked this journey themselves and are ready to share guidance, resources, and a listening ear whenever you need one.

Affected Adults

Managing mito as an adult often means navigating medication safety, work, and daily life largely on your own. Know which medications to avoid or use with caution, and connect with a community of adults living with mitochondrial disease who understand the balancing act.

Newly Diagnosed

Start with the essentials above under Parent & Caregiver and Affected Adults — plus this guide made for you:

A new diagnosis can feel overwhelming, and it's completely normal not to know where to start. Our team can walk you through your first steps one conversation at a time, connecting you with the guides, videos, and people who can help you find solid footing.

Physician Referral

Finding a physician who truly understands mitochondrial disease can make all the difference in your care. Use our physician finder to locate a mito-informed doctor near you, so you're not starting your search from scratch.

Disease Specific

Mitochondrial disease spans dozens of rare subtypes, each with its own symptoms, treatments, and open questions. Learn the fundamentals that connect them all, then explore the disease-specific communities, webinars, and research relevant to your diagnosis.

Government Assistance

Social Security, Medicaid waivers, and other government programs can be confusing and time-consuming to navigate alone. See how UMDF advocates in Washington and beyond to protect the benefits and services our community depends on.

Mental Health and Mito

Living with or caring for someone with mitochondrial disease takes an emotional toll that's easy to overlook. You don't have to carry it alone — our Support Ambassadors and mental health resources offer a listening ear from people who genuinely understand.

Family Planning Resources

Considering growing your family after a mito diagnosis brings its own set of questions. Our team can connect you with genetic counseling, family planning resources, and other families who've navigated the same decisions.

Mito Med

UMDF's free educational webinar series connects patients and families directly with leading mitochondrial disease experts.

UMDF's free educational webinar series connects patients and families directly with leading mitochondrial disease experts throughout the year. Never miss a session — see upcoming Mito Med dates, register in advance, or catch up on past sessions anytime.

Genetic Testing

Genetic testing can be the key to finally getting an answer, and it's available through UMDF at no cost to qualifying families. Learn how the program works and what to expect before, during, and after testing.

Genetic Counseling

A genetic counselor helps you understand test results, recurrence risks, and what a diagnosis means for the rest of your family. Connect with our team to find a qualified specialist and get your questions answered.

Clinical Trials

New treatments start with research, and patients like you make that research possible. See which clinical trials are currently enrolling, and find out whether a study might be the right next step for your care.

Medications

Stay current on FDA-approved and emerging therapies for mitochondrial disease, including Kygevvi for TK2D and Forzinity (elamipretide). Explore what each medication treats, how it works, and where to learn more.