open program

All Mitochondrial Disease Community

The broad Alliance community for people living with any mitochondrial disease or suspected mitochondrial condition.

This program is open. You can join now and begin working through its credit steps. You can read every credit step below before deciding what you want to do. Private health details stay in Mito Map.

Maximum program credits 4,350

Complete every credit milestone to reach this total. Credits are added as each step is completed and checked.

Join this programSee how to earn creditsCompare all programs

Why join

Help build a clearer picture of this condition over time.

Members can share selected updates about what changes, what daily life is like, and what questions matter most. Researchers can use approved group-level information to plan better studies. Your detailed records remain private in Mito Map unless you separately agree to an approved use.

You can also use broader resources from Precision Mito and community matching through Mito Match.

Maximum program credits
4,350

Complete all listed milestones

Planned participants
4,345

A planning goal, not current enrollment

Program details

All Mitochondrial Disease Community

Multi-year program goal
$0
Goal / participant
$0
Potential participants
4,345
Expected active
2,824
Engagement estimate
65%
With mito
0
Without mito
0
Max credits/person
4,350
Program credit pool
18,900,750

Community goal

. Expected active counts estimate how many members may stay engaged over time.

Credit pool estimate

4,345 participants x 4,350 max credits/person. Credits document completed participation activity and may help with eligibility review if a future value-sharing program is approved. Credits are not cash, equity, tokens, or guaranteed payments.

Gradual participation path

Members start with joining credit, then earn more as Mito Map summaries, profile completeness, check-ins, opportunity decisions, and reviewed interactions accumulate up to the program maximum.

Join

100 credits

Create your basic Alliance account. Credits fill gradually as eligible activity is completed.

Sync

250 credits

Connect Mito Map readiness summaries. Credits fill gradually as eligible activity is completed.

Interact

1,000 credits

Contribute deeper readiness signals. Credits fill gradually as eligible activity is completed.

Sustain

2,500 credits

Help review the program. Credits fill gradually as eligible activity is completed.

Program goals are not investment offerings, payment promises, or guaranteed distribution amounts.

Community volunteers

People without a confirmed mito diagnosis can help too.

The All Mito community is planned to include 0 people with mito and 0 people without a known mitochondrial disease as non-mito comparison volunteers. Caregivers, family members, and people still seeking a diagnosis can also help shape a more representative dataset when the program rules allow it.

Join the volunteer path

Comparison check-ins

Recurring wellness, energy, function, and quality-of-life updates help researchers understand what is specific to mitochondrial disease.

Accessibility feedback

Volunteers from different regions, backgrounds, and access needs can test consent flows, check-in wording, and dashboard summaries so participation is easier for everyone.

No diagnosis required

This path does not require a mitochondrial disease diagnosis, Mito Map connection, or medical record upload.

If a specific program needs location, diagnosis status, or another eligibility detail, the page will say so before you apply.

Researcher program

Researchers who publish with Alliance data can share in the value they help create.

When a researcher uses consented Alliance data, publishes useful findings, and follows the program's data-use and publication rules, their work can be recognized through a separate Researcher Value Pool.

Researcher value awards are not guaranteed. Eligibility depends on publication status, data-use compliance, program approval, available qualifying value, and applicable law.

Researcher pool stage
pre-revenue

Separate from the patient pool

Researcher goal
$22,500,000

20% of the combined program goal

Strategic researcher range
$8,875,000-$15,500,000

Planning range for future qualifying value

Program share
20%

Share of combined patient and researcher program goals

Current balance
$0

Current funded balance

Qualifying research impact value
$0

Tracked for this program

Program
All Mitochondrial Disease Community

Credit pathways

Earn up to 4,350 credits in this program.

Start with Step 1 and work through the list at your own pace. Each card shows how many new credits that step adds and what your running total will be. Credits appear after the required activity is completed and checked.

Maximum program credits 4,350

Complete every credit milestone to reach this total. Credits are added as each step is completed and checked.

Step 1
+100credits
100 total after this step

Create your basic Alliance account

Complete every required item below for this milestone:

  • Create your Alliance account
  • Choose the programs you are interested in
  • Connect or authorize Mito Map summaries when you are ready
View exact instructions and links

All Mitochondrial Disease Community · Step 1

Create your basic Alliance account

+100credits for this step

100 total credits after this step

Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.

Required item 1

Create your Alliance account

Exactly what to do

  1. Open the Create Account page.
  2. Enter your name and email, create a password, and select the program that fits you best.
  3. Submit the form, sign in, and open My Programs if you want to add more programs.

How completion is confirmed: Your MDA member account is active and you can open the private dashboard.

Where to complete it

Create my accountSign in

Required item 2

Choose the programs you are interested in

Exactly what to do

  1. Sign in and open My Programs.
  2. Review the open and planning programs and add every program that fits you.
  3. Confirm each selected program shows Added or Interest recorded.

How completion is confirmed: Every selected program appears on your My Programs page. Adding another program does not replace your primary program.

Where to complete it

Choose my programsCompare program details

Required item 3

Connect or authorize Mito Map summaries when you are ready

Exactly what to do

  1. Open Mito Map Sync from your member dashboard.
  2. Connect or refresh Mito Map and review the summary categories you are being asked to authorize.
  3. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes.

How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.

Where to complete it

Open Mito Map SyncReview privacy

Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.

Check my credit progress
Step 2
+250credits
350 total after this step

Connect Mito Map readiness summaries

Complete every required item below for this milestone:

  • Authorize Mito Map or an approved export to share selected summary fields
  • Confirm diagnosis-readiness status through Mito Map or another governed source
  • Keep raw records, labs, symptoms, and genetics in Mito Map unless a specific approved workflow says otherwise
View exact instructions and links

All Mitochondrial Disease Community · Step 2

Connect Mito Map readiness summaries

+250credits for this step

350 total credits after this step

Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.

Required item 1

Authorize Mito Map or an approved export to share selected summary fields

Exactly what to do

  1. Open Mito Map Sync from your member dashboard.
  2. Connect or refresh Mito Map and review the summary categories you are being asked to authorize.
  3. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes.

How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.

Where to complete it

Open Mito Map SyncReview privacy

Required item 2

Confirm diagnosis-readiness status through Mito Map or another governed source

Exactly what to do

  1. Open Mito Map Sync from your member dashboard.
  2. Connect or refresh Mito Map and review the summary categories you are being asked to authorize.
  3. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes.

How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.

Where to complete it

Open Mito Map SyncReview privacy

Required item 3

Keep raw records, labs, symptoms, and genetics in Mito Map unless a specific approved workflow says otherwise

Exactly what to do

  1. Open Mito Map through the secure sync page.
  2. Add or update the information named in this requirement: Keep raw records, labs, symptoms, and genetics in Mito Map unless a specific approved workflow says otherwise.
  3. Save the changes in Mito Map, then refresh your authorized summary connection so MDA can confirm coverage without receiving your raw files.

How completion is confirmed: The approved summary shows that the requested information category is present. Items marked "if available" are not required when you do not have them.

Where to complete it

Update Mito MapSee what MDA stores

Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.

Check my credit progress
Step 3
+500credits
850 total after this step

Keep readiness summaries current

Complete every required item below for this milestone:

  • Complete Mito Map or approved check-ins on the requested cadence
  • Refresh Mito Map summary signals such as completeness, freshness, verification, and coverage
  • Review missing or unclear summary categories when invited
View exact instructions and links

All Mitochondrial Disease Community · Step 3

Keep readiness summaries current

+500credits for this step

850 total credits after this step

Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.

Required item 1

Complete Mito Map or approved check-ins on the requested cadence

Exactly what to do

  1. Open Research Opportunities in your dashboard.
  2. Look for a All Mitochondrial Disease Community check-in, priorities request, or survey.
  3. Read the purpose and privacy details, complete every required question, and submit your response.

How completion is confirmed: The dashboard shows a submitted or accepted response. If no matching request is open, wait for an invitation; this item does not block you before one is offered.

Where to complete it

Complete available check-insUpdate Mito MapView my contribution

Required item 2

Refresh Mito Map summary signals such as completeness, freshness, verification, and coverage

Exactly what to do

  1. Open Mito Map Sync from your member dashboard.
  2. Connect or refresh Mito Map and review the summary categories you are being asked to authorize.
  3. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes.

How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.

Where to complete it

Open Mito Map SyncReview privacy

Required item 3

Review missing or unclear summary categories when invited

Exactly what to do

  1. Open Research Opportunities and look for an invitation connected to this program.
  2. Read what MDA is asking you to review or contribute.
  3. Choose whether to participate, complete the requested activity, and submit it before the stated deadline.

How completion is confirmed: The invited activity is recorded as submitted, accepted, or staff-reviewed. Nothing is required until an eligible invitation is available.

Where to complete it

Check invitationsView credit ledger

Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.

Check my credit progress
Step 4
+1,000credits
1,850 total after this step

Contribute deeper readiness signals

Complete every required item below for this milestone:

  • Keep six months of Mito Map or approved summary updates current
  • Complete patient-priority or lived-experience check-ins when asked
  • Share wearable-summary or function-summary signals only through consented Mito Map or approved exports
View exact instructions and links

All Mitochondrial Disease Community · Step 4

Contribute deeper readiness signals

+1,000credits for this step

1,850 total credits after this step

Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.

Required item 1

Keep six months of Mito Map or approved summary updates current

Exactly what to do

  1. Open Mito Map Sync from your member dashboard.
  2. Connect or refresh Mito Map and review the summary categories you are being asked to authorize.
  3. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes.

How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.

Where to complete it

Open Mito Map SyncReview privacy

Required item 2

Complete patient-priority or lived-experience check-ins when asked

Exactly what to do

  1. Open Research Opportunities in your dashboard.
  2. Look for a All Mitochondrial Disease Community check-in, priorities request, or survey.
  3. Read the purpose and privacy details, complete every required question, and submit your response.

How completion is confirmed: The dashboard shows a submitted or accepted response. If no matching request is open, wait for an invitation; this item does not block you before one is offered.

Where to complete it

Complete available check-insUpdate Mito MapView my contribution

Required item 3

Share wearable-summary or function-summary signals only through consented Mito Map or approved exports

Exactly what to do

  1. Open Mito Map Sync from your member dashboard.
  2. Connect or refresh Mito Map and review the summary categories you are being asked to authorize.
  3. Approve only the requested summary information you are comfortable sharing, then return to MDA after the sync finishes.

How completion is confirmed: MDA receives an approved summary status or updated summary signals. Raw records remain in Mito Map.

Where to complete it

Open Mito Map SyncReview privacy

Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.

Check my credit progress
Step 5
+2,500credits
4,350 total after this step

Help review the program

Complete every required item below for this milestone:

  • Keep a full year of updates current
  • Help review missing fields or confusing aggregate results when invited
  • Join advisory, listening, protocol-review, or plain-language review work when invited
View exact instructions and links

All Mitochondrial Disease Community · Step 5

Help review the program

+2,500credits for this step

4,350 total credits after this step

Complete every required item below. You can work through them over time and return to your dashboard whenever you are ready.

Required item 1

Keep a full year of updates current

Exactly what to do

  1. Open Mito Map and review what has changed since your last update.
  2. Add the requested symptom, function, care, test, treatment, or daily-life updates.
  3. Repeat on the schedule named in this requirement and refresh the MDA summary connection after each meaningful update.

How completion is confirmed: Your authorized summary shows the required update period and recent activity for All Mitochondrial Disease Community.

Where to complete it

Add or refresh an updateCheck credit progress

Required item 2

Help review missing fields or confusing aggregate results when invited

Exactly what to do

  1. Open Research Opportunities and look for an invitation connected to this program.
  2. Read what MDA is asking you to review or contribute.
  3. Choose whether to participate, complete the requested activity, and submit it before the stated deadline.

How completion is confirmed: The invited activity is recorded as submitted, accepted, or staff-reviewed. Nothing is required until an eligible invitation is available.

Where to complete it

Check invitationsView credit ledger

Required item 3

Join advisory, listening, protocol-review, or plain-language review work when invited

Exactly what to do

  1. Open Research Opportunities and look for an invitation connected to this program.
  2. Read what MDA is asking you to review or contribute.
  3. Choose whether to participate, complete the requested activity, and submit it before the stated deadline.

How completion is confirmed: The invited activity is recorded as submitted, accepted, or staff-reviewed. Nothing is required until an eligible invitation is available.

Where to complete it

Check invitationsView credit ledger

Items marked "if available" are optional when you do not have that information. Invitation-based work is required only after MDA offers an eligible activity.

Check my credit progress

When will my credits appear?

MDA adds credits after the activity is complete and its required information can be confirmed. Some steps are confirmed automatically after a Mito Map sync. Surveys, reviews, and other invited activities may need staff review. For disease-specific programs, MDA may also confirm diagnosis or genetic-testing information when it is available.

If a checklist says "if available," you can finish the step even when that information does not exist for you. If a step requires an invitation, wait until MDA offers that activity. Credits record participation; they are not money, ownership, or a promise of payment.

Join this programSync Mito MapReview opportunitiesView my credit ledger

Possible future payments

Credits do not guarantee payment.

This program is currently at the pre-revenue stage. Its patient pool currently holds $0. It has recorded $0 in qualifying revenue and $0 in approved past distributions.

If the program receives qualifying money and approves a Patient Success Distribution, members generally need active enrollment and at least 50 qualifying credits to be considered. Any approved amount would depend on the program rules and each eligible member's credits. Payment is never guaranteed.