Active programs
6Disease and community paths you can explore
Patients & families
A simple starting point for patients and families, with optional paid participation paths.
If mitochondrial disease affects you or someone you love, MDA helps you learn what research participation can look like before you share sensitive details. You can read public pages, join for free, add updates over time, and see whether any eligible activities may later earn credits or approved Patient Success payments. Caregivers can help, but the patient or family stays in control.
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.
Participation credits record completed activity. They are reviewed under the same program rules for every member, and they are not cash, equity, tokens, or guaranteed payment.
If symptoms, care, or goals have changed, use the patient visit summary template to write down what changed and the questions you want to bring back.
Broader participation
More than one kind of mito story can help the network grow.
People with a confirmed mitochondrial diagnosis, people still looking for answers, caregivers, family members, and comparison volunteers in programs that allow it can all help. You can also join from different places and share broad location details instead of exact home information.
Different disease programs can welcome different groups.
Caregivers can help keep a record current over time.
Comparison volunteers only appear where a program allows them.
MDA keeps public forms lightweight and privacy-safe, and Mito Map is where detailed health updates belong when you are ready.
Immediate value
You can learn first and join when ready.
Understand what MDA does and what Mito Map does.
See which programs can include paid patient participation.
Prepare questions for a clinician, caregiver, or family conversation.
If a clinician referred you, bring the clinician handout or share the Clinicians page back with your care team.
Look at open programs and see whether one fits your situation.
Use Mito Map later to keep private notes, questions, and follow-up organized for future care conversations.
Get updates without sharing medical records.
Open opportunities
6Research activities available for review
Optional paid participation
Built inEligible activities can earn credits and potential payments after review
Mito Map members
Not yet availableShown as a total only, without private records
Recent updates
Not yet availableProfiles updated in the past 180 days
What you get
Participation should be clear, optional, and useful.
A clearer health story
Organize diagnosis, symptoms, treatments, goals, and changes over time in Mito Map.
Choices before sharing
See what is being asked, who is asking, and decide whether you want to take part.
Optional paid participation options
Review Alliance-approved check-ins, studies, and community research requests that may include participation credits and approved payments. Joining MDA stays free.
Useful summaries
Create summaries that can help you explain your journey to researchers or your care team.
Patient stories
Your story can help the next family start with more clarity.
MDA invites patients and caregivers to share short, reviewed stories about diagnosis, daily life, care navigation, research priorities, or what they wish others understood. Public stories are reviewed first and published only with permission.
Share what changed, what helped, or what you wish another family knew.
Use broad descriptions instead of private identifiers or full medical details.
Choose review-first, contact-only, or anonymous-only publication preferences.
MDA will not publish identifiable story details without confirming permission.
What comes back to you
Participation should return practical value, not just take information.
A simpler handoff
When you choose to share, Mito Map summaries can reduce the need to rebuild your story from memory before appointments or research reviews.
Clearer invitations
Research requests can explain purpose, burden, and review steps so you can decide whether a study or program is worth your time.
Possible payment for eligible participation
MDA programs are designed to return value to patients through credits and approved Patient Success payments when rules, eligibility, and qualifying value allow.
Community support
Newsletters, events, and patient stories can help you stay connected without exposing private health details.
Respect for consent
You can review, change, or narrow future sharing choices when your situation changes, and revocations or restrictions are honored where the system supports them.
Care experience
Participation can make visits feel more organized.
Bring a clearer timeline
Keep diagnoses, treatments, symptoms, and changes in one place so you are not rebuilding the story before every appointment.
Reduce repeat retelling
Use Mito Map summaries to share the same core information with different members of your care team when that is helpful.
Prepare better questions
Public pages and private summaries can help you think through what matters most before a visit or follow-up call.
Keep support close
Caregivers can help manage updates, and you can return to your profile when circumstances change.
Bring to your next visit
A short summary is often easier to use than a long story.
Patients and caregivers can come prepared without needing to organize everything perfectly. The goal is to make it easier to share what has changed and what questions matter most.
Write down the main changes since the last visit, especially anything new, worse, or still unclear.
Bring a Mito Map summary or notes if you already have one, so you do not have to rebuild the story from memory.
List the questions you want to ask, so the visit can focus on the topics that matter most to you.
Note who is helping with care, scheduling, or follow-up if you want that support reflected in the conversation.
MDA is educational and not a substitute for medical advice, diagnosis, or treatment.
After you join
Your first session should feel practical, not overwhelming.
Choose a program
Start with the broad Alliance community or an open disease program that fits your situation.
Connect when ready
Use Mito Map for detailed profile information, private tracking, consent choices, and research matching.
Review paid opportunities
Look at check-ins, studies, community requests, credit rules, and return-of-value expectations one at a time.
Check progress
Use your dashboard to see enrollment, contribution activity, and public impact without exposing private records.
First 30 days
Keep the first month simple and patient-controlled.
Finish your account setup and choose the program that fits you best.
Review the summary preview so you know what Mito Map can organize before you share more.
Come back when symptoms, care, or goals change so your next summary stays current.
Send us feedback if any step felt confusing, so onboarding stays clear for the next person.
Mito Map handoff
The public site starts the path; the private profile stays separate.
1. Start with MDA
Create a lightweight Alliance account, choose a program, and review privacy expectations before sharing detailed health information.
2. Connect Mito Map when ready
Use Mito Map for symptoms, labs, genetics, records, granular consent, study matching, and personalized readiness information.
3. Change course later
Return to update your private profile, review new opportunities, or change consent choices. Revocations and restrictions are honored before downstream use.
Return rhythm
Small check-ins over time make the community more useful.
Coming back after symptoms, care, or goals change keeps your next summary current, so the information you choose to share stays useful when you need it.
Keeping symptoms, care, and goals up to date also makes the next summary easier to bring to appointments and questions.
Update Mito Map when symptoms, care, function, medications, or goals change so your next snapshot reflects what is actually happening.
Check back for new research opportunities, event recaps, and plain-language impact updates that may be worth another visit.
Use summaries to prepare questions and timelines for care conversations; MDA does not provide medical advice.
Invite a clinician, caregiver, or researcher to learn from public MDA pages when helpful, then bring the conversation back into Mito Map.
Why return matters
Each return visit makes the next summary and impact report clearer.
Current is better than static
A longitudinal profile is more useful when it reflects recent changes in care, symptoms, and function.
Repeated check-ins reveal patterns
Returning after major changes helps researchers understand progression, stability, and response to treatment over time.
Fresh updates unlock better follow-up
New opportunities, summaries, and dashboard status are easier to interpret when your Mito Map record stays current.
Public reporting stays aggregate
MDA can show community progress, not private records, so patients can see the value of returning without losing control of their data.
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.
Before you join
Plain-language trust comes before data collection.
MDA does not provide medical advice or replace your clinician.
The public MDA website shows overall community activity, not your private medical records.
Eligible participation can be paid, but payment is never guaranteed and depends on program rules, approval, eligibility, and qualifying value.
Mito Map is the private place for symptoms, labs, genetics, wearable data, and personalized research information.
You can learn about the Alliance before creating an account.