FAQs
UMDF Resource Hub
Resources for Every Step of the Mito Journey
Whatever brought you here today — a new diagnosis, a question about care, or a search for community — you'll find trusted, UMDF-vetted resources organized by what matters to you.
Parent & Caregiver
- Patient Care Standards document in MitoU, for clinicians
- New Patient Guide (English, Spanish, Chinese) in MitoU, for patients & families
- Ask the Mito Doc: “Mitochondrial Disease Primer: Guide for the Newly Diagnosed” – Dr. Melissa Walker
- Ask the Mito Doc: “Genetics 101” – Dr. Fernando Scaglia
- Obtaining Educational Accommodations for Children with Mitochondrial Disease – Mito Med 2022
- NIH Fact Sheet: Dietary Supplements for Primary Mitochondrial Disorders
- UMDF Event Calendar
- Get Support – connect with a Support Ambassador
- mitoSHARE Patient Registry
- Energy for Life Walk
- UMDF Advocacy
- Mito Med ’26 – transitioning to adult care (session available soon)
- Follow UMDF on Social Media
Affected Adults
- Patient Care Standards document
- New Patient Guide (English, Spanish, Chinese)
- Ask the Mito Doc: “Mitochondrial Disease Primer: Guide for the Newly Diagnosed” – Dr. Melissa Walker
- Ask the Mito Doc: “Genetics 101” – Dr. Fernando Scaglia
- NIH Fact Sheet: Dietary Supplements for Primary Mitochondrial Disorders
- UMDF Event Calendar
- Get Support – connect with a Support Ambassador
- mitoSHARE Patient Registry
- Energy for Life Walk
- UMDF Advocacy
- Follow UMDF on Social Media
- Medicines to Avoid or Use with Caution – International Mito Patients
Newly Diagnosed
Start with the essentials above under Parent & Caregiver and Affected Adults — plus this guide made for you:
Physician Referral
Resources for this section are in development — check back soon.
Disease Specific
- MELAS
- Leigh Syndrome
- Mito Med 2022 YouTube Playlist
- Mito Med 2026 Leigh Syndrome track recordings (coming soon)
- PDCD
- CPEO / KSS
- LHON
- LHON+
- POLG
- MEPAN
- MERRF
- NARP
Mental Health and Mito
- Grief information & resources
- Mental Health Q&A Panel – Mito Med 2024
- Navigating Mental Health: Understanding Psychotherapy – Mito Med 2024
- Palliative Care: Providing a Path to Managing Your Mental Health – Mito Med 2024
- Mitochondria May Hold the Keys to Your Mental Health – Mito Med 2024
- Clinical Mental Health and the Mitochondrial Disease Patient – Mito Med 2024
- Beyond the Diagnosis: Addressing Loss, Mental Health, and Palliative Care for Mito Patients – Mito Med 2025
Family Planning Resources
Resources for this section are in development — check back soon.
Mito Med
UMDF's free educational webinar series connects patients and families directly with leading mitochondrial disease experts.
Genetic Testing
- No-Cost Genetic Testing Program
- MMS Consensus Statement: Diagnosis and Management of Mitochondrial Disease
- 2026 Mito Med – Dr. Kuntal Sen's genetic reanalysis session (coming soon)
- 2025 Ask the Mito Doc: “Genetic Testing in Mitochondrial Disease: What Patients and Families Need to Know”
- 2024 Ask the Mito Doc: “Understanding Genetic Testing”
Genetic Counseling
- UTHouston genetic counseling program information
- Find a genetic counselor
Program details and a counselor-finder link are being finalized for this section.
Clinical Trials
Medications
Have a resource to suggest, or a broken link to report? Contact the UMDF team.
UMDF Resource Hub
Resources for Every Step of the Mito Journey
Whatever brought you here today — a new diagnosis, a question about care, or a search for community — you'll find trusted, UMDF-vetted resources organized by what matters to you.
Parent & Caregiver
Affected Adults
Newly Diagnosed
Physician Referral
Disease Specific
Government Assistance
Mental Health and Mito
Family Planning Resources
Mito Med
Genetic Testing
Genetic Counseling
Clinical Trials
Medications
Have a resource to suggest, or a broken link to report? Contact the UMDF team.