1. Create a basic account
Use your name, email, password, and the program that best fits you.
Join MDA
Join the mitochondrial disease community in a few minutes.
Mito Discovery Alliance is for people with mitochondrial disease, people still looking for answers, caregivers, family members, clinicians, researchers, supporters, and comparison volunteers when a program allows it. Joining is free. You can start with a basic account. You do not need medical records, genetic reports, or a Mito Map profile to join.
First session: create a free account, choose a program, and come back later for private health details only if you want to use Mito Map. If you do, it can help keep your summary current when symptoms, care, or goals change.
If a clinician, caregiver, or support group sent you here, start with the free join flow first. Keep any printed handout with you and bring it back to clinic if you want help deciding what to do next.
Share MDA
Send people to the page that fits what they need.
If MDA is useful to you, share the exact page that matches the person you are helping. That keeps the first step simple and keeps private health details in Mito Map.
Patients and families: share Patients & Families for a simple starting point.
Clinicians: share Clinicians for the referral path, printable handout, and quick-start one-pager. Patients can then come back here to start the free join flow when they are ready.
Stories and events: share Community for story prompts, event interest, and newsletter signups.
Updates only: share Newsletter for event dates, impact notes, and research participation news.
Supporters: share Partner With Us or Donate if they want to help fund the work.
If a clinician already sent you here, bring the handout or share the clinician page back with the care team so the next step stays patient-controlled and easy to follow.
What happens next
The short version.
2. Read before sharing
You can review privacy, consent, programs, and research opportunities before adding health details.
3. Add details only when ready
If you use Mito Map later, it can help organize your private health story and consent choices.
4. Keep contributing over time
Research participation is optional, explained before you decide, and strongest when you come back with updates after symptoms, care, or goals change.
After you join
Add private health details only when they are useful to you.
Your MDA account begins with basic information. If you later use Mito Map, you can privately organize symptoms, diagnoses, treatments, genetic information, appointments, and updates. You decide what to enter, what to share, and which research opportunities to consider. Mito Map can also help you notice missing information and prepare a short summary for a care visit. You can decline any opportunity unless a program clearly states a different requirement before you join.
No records needed to start
Create an account with your name, email, password, and the program that best fits you.
Review one request at a time
See what each research invitation asks before deciding. Where possible, you can change future sharing choices later.
Keep your story current
Update Mito Map when your health changes so you have a clearer timeline for yourself, your care team, and future research.
Get organized
Mito Map can point out information to update, keep reminders together, and show possible study opportunities. The public MDA website does not provide personalized recommendations.