Patient programs
6All Mito plus disease-specific paths
Patient-led mitochondrial discovery
Mito Discovery Alliance
Helping people affected by mitochondrial disease connect, participate in research, and stay in control.
Learn about mitochondrial disease research, find programs that fit your needs, and decide how you want to participate. You can join MDA for free with basic account information. If you later choose to use Mito Map, your health details and consent choices stay private there.
Participation credits track eligible activities you complete. They are not cash, equity, tokens, or a promise of payment. The same published rules apply to everyone in a program.
Potential participants
5,000Across current patient programs
Expected active
3,000Estimated engaged cohort
Funding goal
$50,000,000Combined patient program goal
Goal / participant
$10,000Planning estimate for patient value
Open opportunities
6Dynamic consent required
Choose your path
Find the right starting point for you.
Patients & families
Find support and research opportunities
Create a free account, explore programs, and learn which activities may offer participation credits or payments.
Start as a patient Clinicians Help patients take the next stepUse the clinician guide, printable handout, and evidence library to refer patients without sending medical records.
Open clinician resources Researchers Plan research with patientsTell us what you want to study, what information you need, and how you will protect participants.
Explore research Partners & funders Support responsible collaborationReview collaboration and funding opportunities without receiving direct access to private patient information.
Partner with usA patient-centered discovery loop
Your participation can help create breakthroughs—and patients share in the value.
Private patient data stays protected. Researchers receive only the approved information they need, helping discoveries move toward new drugs, therapies, and companies. When those efforts succeed, patients can be compensated under clear program rules.
Compensation depends on the published rules and successful outcomes for each program; it is not guaranteed.
You choose how to begin
Learn first. Share only when you are ready.
Explore without joining
Read about MDA, its programs, and its privacy rules before you create an account.
Start with the basics
A free MDA account only requires basic information. Add private health details in Mito Map later if you choose.
Understand possible payments
Some eligible activities earn participation credits and may lead to an approved Patient Success payment. Payments depend on the published rules for each program and are not guaranteed.
Share at your pace
When you are ready, Mito Map can organize the details you choose to add and help you find relevant research opportunities.
Stay in control
Review each opportunity before deciding. You can say no and, where possible, change future sharing choices.
Why MDA exists
MDA gives families a clear place to learn, find support, and choose what to share.
Start your way
Learn, ask questions, get the newsletter, or create a free account without sharing health details.
Keep health details private
Symptoms, medical records, genetic information, and consent choices stay in Mito Map—not in MDA's public forms.
Know what each study asks
Researchers must explain the study's purpose, what information they need, what participants will do, and how the community may benefit.
Recognize patient contributions
Eligible activities may earn credits or approved payments under a program's published rules. Payment is never guaranteed.
MDA and Mito Map
Use this website to learn and join. Use Mito Map for private health details.
This is the public starting point. Read about the mission, join the community, see open programs, ask questions, and learn how research participation works. Joining is free.
This is the private profile tool. It helps members organize health details, manage consent choices, and review study matches when they are ready. You do not need Mito Map just to read this site or create an MDA account.
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.
Patient stories
Your experience can help families and researchers.
Patient and caregiver stories can help another family feel less alone and show researchers what matters in daily life. MDA reviews every story and gets your permission before publishing identifying details. Medical records do not belong in the story form.
Start with a short prompt instead of a full essay.
Choose whether MDA may contact you, review the story with you, or publish an anonymous version.
Avoid lab reports, genetic reports, full treatment histories, exact dates of birth, and urgent medical questions.
MDA only shares an approved story on its website or social channels with your permission.
Help others find MDA
Share the page that fits each person's needs.
Help patients, clinicians, researchers, and supporters find the most useful place to begin. Share MDA's public pages—not private health details.
Shareable line: MDA helps people affected by mitochondrial disease find community and research opportunities. Mito Map keeps health information and consent choices private.
Send patients and families to Patients & Families when they want a simple starting point.
Send clinicians to Clinicians when they want the referral path, handout, and source-linked evidence library.
Send stories, event interest, and newsletter signups to Community.
Send updates-only visitors to Newsletter when they want community notes without creating an account.
Send supporters to Partner With Us if they want to review a governed collaboration, or to Donate if they want to help fund the work.
Why come back
Stay up to date with stories, events, and progress.
Get updates through the newsletter without signing in, visit the Impact page to follow MDA's progress, and update Mito Map when your health information changes. Before a care visit, bring a current summary and your most important questions.
Stories: new reviewed stories and community notes.
Events: listening sessions, webinars, and other community dates.
Impact: short progress notes and milestone updates.
Mito Map: refresh private details there when your story changes.
What we believe
Patients are partners, not data products.
People living with mitochondrial disease understand their daily experience better than anyone. MDA brings patients, caregivers, clinicians, researchers, and industry partners together with clear consent choices and shared rules.
How to participate
Start with an account, then choose what comes next.
01
Join Mito Discovery Alliance
Create a free account with basic information. Some eligible program activities may offer payment.
02 Connect Mito MapIf you choose, use Mito Map to organize private health details and consent choices in one place.
03 Choose a programExplore disease communities, eligible activities, and research opportunities that fit your interests.
04 Review each requestSee what an approved opportunity involves, then use Mito Map to make detailed consent choices.
05 See impactFollow public progress and review your participation credits and any approved payment updates.
06 Support useful researchLearn how MDA recognizes researchers who turn consented information into findings the community can use.
Current programs
Disease programs and community goals
Patient programs
6Community and disease-specific paths
Potential participants
5,000Across listed programs
Expected active
3,000Estimated engaged cohort
Mito disease participants
1,000All Mito community goal
Comparison volunteers
3,345Non-mito comparison goal
Patient value goal
$50,000,000Combined multi-year patient program goal
Open opportunities
6Across current programs
All Mitochondrial Disease Community
- Patient value goal
- $8,875,000
- Goal / planned patient
- $2,043
Open now: this cohort can support current study conversations and member joins.
Leigh Syndrome Program
- Patient value goal
- $9,000,000
- Goal / planned patient
- $56,250
Open now: this cohort can support current study conversations and member joins.
MELAS / m.3243A>G Program
- Patient value goal
- $16,000,000
- Goal / planned patient
- $100,000
Open now: this cohort can support current study conversations and member joins.
OPA1 Discovery Program
- Patient value goal
- $6,750,000
- Goal / planned patient
- $54,000
Open now: this cohort can support current study conversations and member joins.
POLG Discovery Program
- Patient value goal
- $5,625,000
- Goal / planned patient
- $45,000
Open now: this cohort can support current study conversations and member joins.
TWNK Discovery Program
- Patient value goal
- $3,750,000
- Goal / planned patient
- $44,118
Open now: this cohort can support current study conversations and member joins.
LHON / Mitochondrial Optic Neuropathy Program
- Patient value goal
- $8,000,000
- Goal / planned patient
- $44,444
Planning stage: this cohort is for shaping a future study or disease program before outreach starts.
m.3243A>G Multisystem / MIDD Program
- Patient value goal
- $14,000,000
- Goal / planned patient
- $58,333
Planning stage: this cohort is for shaping a future study or disease program before outreach starts.
MERRF / m.8344A>G Program
- Patient value goal
- $5,000,000
- Goal / planned patient
- $55,556
Planning stage: this cohort is for shaping a future study or disease program before outreach starts.
MT-ATP6 / NARP / Leigh Spectrum Program
- Patient value goal
- $6,000,000
- Goal / planned patient
- $60,000
Planning stage: this cohort is for shaping a future study or disease program before outreach starts.
Single Large-Scale mtDNA Deletion Program
- Patient value goal
- $7,000,000
- Goal / planned patient
- $58,333
Planning stage: this cohort is for shaping a future study or disease program before outreach starts.
Research Impact Program
Research should produce value the community can see.
The Research Impact Program recognizes researchers who use consented information responsibly and share useful findings in plain language. This work may inform therapy development, but it cannot guarantee that a therapy will be approved.
Researcher goal
$22.5M20% of the combined program goal
Program type
ResearcherSeparate from patient participation pools
Supporting therapy development
Better evidence can help researchers and sponsors make better decisions.
Patient participation
Patients and families choose whether to join, what to share, and when to refresh their history. That steady participation is the first step in building a stronger evidence picture over time.
Consented summaries
Selected summaries, not raw records, help researchers learn while respecting privacy boundaries.
Group-level learning
Aggregate patterns can show whether a question is worth studying and where more information is needed.
Research collaboration
Researchers must agree on the question, the data needed, the patient burden, and the return of value before approved work moves forward.
Sponsor review
Sponsors can review approved summaries and notes while private patient access remains protected.
Better therapy development
When those steps line up, research teams can review the evidence path more clearly and make better therapy-development decisions. That may help more candidates move through review over time, but MDA does not claim or guarantee approval.
MDA can support evidence gathering, research collaboration, and sponsor review. It does not claim credit for any therapy approval or guarantee approval, eligibility, or clinical benefit.
Research opportunities
Share a Leigh syndrome care update
15 minutes per update - 75 contribution credits
Check your POLG profile details
20 minutes one time - 80 contribution credits
Keep TWNK priorities current
10 minutes to start, then periodic refresh - 50 contribution credits
Mito Map integration
Share selected summaries without entering the same information twice.
Mito Map is where members track detailed health information and manage consent. With your permission, it can share selected summaries with MDA—such as whether your profile is complete, when it was updated, and your participation history—without sending every record. Related tools such as Mito Match and Precision Mito support the wider mitochondrial disease research community.