Resources, Answers & Support

At Every Step of Your Mitochondrial Disease Journey

UMDF is Here to Help.

We know you’re seeking answers. UMDF is here to educate in difficult times, provide helpful resources and offer caring support. Connect with our Patient Concierge or contact our Support Line at (888) 900-6486 weekdays from 8:00am to 5:00pm EST.

A Patient Concierge can connect you with a local mito family or a UMDF Support Ambassador from our national network of volunteers.

Mitochondrial Care Network: New Patient Guide

An informative toolkit prepared by the medical community to help guide newly diagnosed patients, their families and caregivers.

MCN: New Patient Guide (Español)

Find a Doctor

UMDF maintains a list of 200+ doctors treating and researching mitochondrial disease.

Helpful Resources

From webcasts to podcasts, UMDF keeps you connected and informed on the latest in mitochondrial disease.

Ask the Mito Doc

Clinicians answer your questions in this monthly webcast series to help patients and families connect with the mitochondrial disease medical community. 

Bench-to-Bedside

This ongoing seminar series brings the global scientific community together to discuss mitochondrial disease research.

Mito U

Visit our library of on-demand videos and curated articles to better navigate and understand a mitochondrial disease diagnosis.

The Powerhouse Podcast

Tune in as UMDF CEO, Brian Harman, and UMDF Science & Alliance Officer, Dr. Phil Yeske, chat with interesting people in the mito community.

Travel Tips for Mito Families

UMDF ambassadors and partners at the University of Minnesota have put together tips for mito patients and their loved ones as they prepare to hit the road (or skies).

  • Mito Travel Guide: reminders on managing care, packing and flying.
  • Travel Checklist: a suggested packing list and advice for patients traveling for the first time.

Courtesy of University of Minnesota, Orphan Drug Research Course – Student Team “Blue Genes” and UMDF Ambassadors.

Other Resources

Virtual Support Services Available

UMDF Support Group

This Facebook Group consists of 10,000+ members networking with people around the world affected by mitochondrial disease.

Join Now →

Meetings & Events

From young adult happy hours to disease specific meetings, UMDF hosts virtual events across the U.S. so you can engage with other patients and families.

Visit the Event Calendar →

UMDF Mito Grief Mentors

A private Facebook Group for those who have lost a loved one to mitochondrial disease or are in palliative care or hospice.

Join Now →

Inspire Mito Energy Connection

A peer-to-peer online support and discussion community to gather and share information about genetic testing, family issues and more.

Join Now →

Attend Mitochondrial Medicine Conference

Discover an entire community of resources and support services during UMDF’s annual Conference. As the world’s preeminent event for mitochondrial disease, the Conference gives patients and families the opportunity to meet some of the top clinical mitochondrial specialists from around the world and attend social events to network with others who share your journey.

Connect with a

UMDF Support Ambassador

Our team of 90+ dedicated volunteers understand what you’re experiencing and are here to listen, talk and offer a shoulder to lean on.

Kristen
Hanover, PA

“Through the magic of social media, I was connected with UMDF Support Ambassador Stacy. She has been so welcoming and ready to share any and all her knowledge and experiences with me. She connected me with other families, which has been invaluable during the ups and downs of my daughter’s diagnosis process.” Kristen • Hanover, PA

 

 

Stacy
Baltimore, MD

Let us connect you with a UMDF Support Ambassador who shares your diagnosis, lives in your area, or specializes in various topics.

Social Security Disability

Transitioning to Adulthood

IEPs and School Issues

Medical Child Abuse

Total Parental Nutrition (TPN)

Medical Cannabis

Disease Specific Support

General Support and Grief

Navigating Insurance

Contact a Patient Concierge at (888) 900-6486

When you connect with our UMDF Support Team you will speak directly with a compassionate Patient Concierge. We can help with everything from grief support and family planning materials to young adult resources.