For patients

Your participation can help create value. Any sharing happens only under program rules.

Mito Discovery Alliance is built around a simple fairness principle: patients should know what they are joining before they share information. Participation may create future value, but any sharing of that value depends on approved program rules, qualifying revenue, and review. The same published rules apply to everyone in a program, so people can compare opportunities before they decide.

Every additional participant can make the program more useful for natural history research, study design, recruitment, and future treatment development.

Join the AllianceSee consent choices

Today

Many programs make the rules hard to see up front.

01

You share time or records.

02

You complete surveys or check-ins.

03

You join studies when you want to.

04

You may use devices or apps.

05

The work can help sponsors, researchers, or companies.

06

You should be able to see the rules before you decide.

Mito Discovery Alliance changes that.

You own your participation.

You choose what to share, review opportunities before joining, and can be compensated when programs qualify. Your data can help researchers understand disease patterns, prepare studies, and plan future work. If an approved program creates qualifying value, the published rules explain how any patient sharing is handled.

You choose what to share

Participation is consent-driven, opportunity by opportunity. You can say yes, no, or wait.

You can be compensated

Some activities or approved program results may create patient compensation opportunities. No payment is guaranteed.

Your data helps research

Better participation helps researchers understand disease, prepare studies, and review what questions are worth asking next.

Value can flow back

If an approved program creates qualifying value, some of that value may be shared with the patients who helped create it, subject to program rules and eligibility.

How participation is recognized

Contribution credits can reflect data completeness, data freshness, verification, longitudinal participation, research responses, wearable summaries, and functional testing summaries. They help document participation activity; they are not cash, equity, tokens, or a guaranteed payment.

Higher participation levels require more than signing up: dated Mito Map or equivalent evidence, diagnostic or genetics status where available, recent clinical and lab summaries, repeated longitudinal updates, and measured functional testing or clinician-assessed function when feasible. The published rules stay the same for every member in a program so crediting is visible and comparable.

What "program credit pool" means

The program credit pool is a program-wide planning number based on the expected participant count and the listed participation tasks. It is not a per-person grant. Individual members earn contribution credits only for completed, consented, and recorded participation activity.

Why goals are higher than expected active counts

Some members may sign up but not complete baseline evidence, consent steps, record sync, or repeat follow-up. The expected active count is an estimate of the cohort likely to remain engaged for natural history, research, and recruitment conversations.

How credits are given out

Credits are recorded after an activity is completed or validated: Mito Map summary sync, equivalent structured evidence review, diagnostic or genetics validation where applicable, longitudinal check-ins, measured function or wearable summaries, accepted research opportunities, and invited advisory or review work.

Open research opportunities list a specific credit amount. Those opportunity credits are added when a member opts in and are removed if the member later declines or withdraws. Task credits require the underlying evidence to stay complete, current, and consistent with the opportunity requirements.

How distributions may work

Patient Success Distributions may occur only if qualifying commercial revenue exists and the program approves a distribution under governing rules. The current v1 engine treats eligible members as active enrolled program members with at least 50 recorded participation credits, then allocates approved direct-patient pool amounts pro-rata by qualifying credits. If payments are approved, they are recorded in member ledgers. No payment is guaranteed.

Participation pool
$0

Available aggregate direct-patient balance

Qualifying revenue
$0

Across recorded pool events

Qualifying events
0

Revenue events contributing to pools

Historical distributions
$0

Approved aggregate total

How qualifying revenue is split

When revenue qualifies, MDA records a direct patient pool, patient-services support, research reinvestment, and platform reinvestment. The current default split of allocated qualifying revenue is 35% direct patient pool, 20% patient services, 25% research reinvestment, and 20% platform reinvestment.

Researcher value sharing

The Alliance can also track a separate Researcher Value Pool for researchers who publish with consented Alliance data. This is meant to reward useful, compliant publication work without taking value away from patient participation recognition. Researcher awards depend on publication status, program approval, available qualifying value, and applicable rules.

Public participant dashboard

Open registry participation metrics.

This dashboard shows aggregate Alliance participation without exposing member identities or private health data. Source labels below explain whether a number is Observed, Synced summary, Derived, or Planning.

Total participants
100

Observed aggregate count

Mito Map synced
100

Synced summary count

Programs with members
2

Observed Alliance program count

Open opportunities
6

Observed open request count

Avg contribution score
430

Derived from latest contribution scores

Avg RAI
4

Derived Research Asset Index across programs

Trial-ready members
0

Derived from synced summaries

Updated in 180 days
100

Observed recent-update count

Privacy posture
Aggregate only

No public member identifiers

How to read this page

We would rather label a number carefully than make it sound more certain than it is.

Observed means a count comes from current Alliance records. Synced summary means the number comes from approved Mito Map summary fields, not raw charts or full histories. Derived means a score is calculated from existing records. Planning means a goal or estimate, not a promise.

Observed: participant totals, program counts, open opportunities, and recent update counts.

Synced summary: Mito Map sync counts plus genetics, labs, wearables, and other summary-coverage totals.

Derived: contribution scores, Research Asset Index, and trial-readiness estimates.

Planning: program goals, goal per participant, and expected active counts. These are not payouts, outcomes, or guarantees.

Not shown: raw records, individual identities, medical advice, or trial eligibility.

Current public reading rule: This page stays aggregate on purpose. If a live input is unavailable, MDA prefers a summary or planning label over pretending a clinical or enrollment number is more certain than it is.

Why transparency helps science

Clear participation makes the science easier to trust.

When people can see what is being asked and join in a clear, consented way, researchers can design better studies, compare aggregate patterns more cleanly, publish clearer reports, and return plain-language findings when results are ready.

Aggregate reporting stays separate from private records.

Study questions stay easier to review before patients spend time.

Returned findings can come back in plain language when they are ready.

Mito Map evidence

Registry depth from synced summaries.

These are aggregate counts from consented Mito Map summary fields or equivalent structured records. Raw health records are not shown publicly.

Genetics
0

Synced summary count

Clinical records
0

Synced summary count

Labs
0

Synced summary count

Wearables
4

Synced summary count

Measured function
100

Synced summary count

Questionnaires
0

Synced summary count

Avg categories
6.8

Derived from synced summaries

Function score
57

Derived from synced summaries

Counts on this section describe summary coverage only. They do not mean a study match, a trial decision, or a clinical recommendation has been made.

Disease communities

Participation by program

Create account dashboard
open

All Mitochondrial Disease Community

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

Participants
100

Observed program count

Program goal
$8,875,000

Multi-year planning goal

Goal / participant
$2,043

Planning estimate

Mito Map synced
100

Synced summary count

RAI
25

Derived Research Asset Index

Trial-ready
0

Derived from synced summaries

Longitudinal
100

Derived from synced summaries

Cohort quality
38

Completeness + freshness + verification

Avg score
430

Derived from latest contribution scores

Measured function
100

Synced summary count

Program details

All Mitochondrial Disease Community

Multi-year program goal
$8,875,000
Goal / participant
$2,043
Potential participants
4,345
Expected active
2,607
Engagement estimate
60%
With mito
1,000
Without mito
3,345
Max credits/person
4,350
Program credit pool
18,900,750

Community goal

1,000 with mito + 3,345 without mito. 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.

open

Leigh Syndrome Program

An open patient partnership program for Leigh syndrome and related mitochondrial disease communities.

Participants
0

Observed program count

Program goal
$9,000,000

Multi-year planning goal

Goal / participant
$56,250

Planning estimate

Mito Map synced
0

Synced summary count

RAI
0

Derived Research Asset Index

Trial-ready
0

Derived from synced summaries

Longitudinal
0

Derived from synced summaries

Cohort quality
0

Completeness + freshness + verification

Avg score
0

Derived from latest contribution scores

Measured function
0

Synced summary count

Program details

Leigh Syndrome Program

Multi-year program goal
$9,000,000
Goal / participant
$56,250
Potential participants
160
Expected active
96
Engagement estimate
60%
Max credits/person
1,550
Program credit pool
248,000

Community goal

Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.

Credit pool estimate

160 participants x 1,550 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

75 credits

Join Leigh and connect readiness source. Credits fill gradually as eligible activity is completed.

Sync

225 credits

Complete Leigh care-readiness summary. Credits fill gradually as eligible activity is completed.

Interact

500 credits

Keep Leigh summaries current. Credits fill gradually as eligible activity is completed.

Sustain

750 credits

Help prepare Leigh research data. Credits fill gradually as eligible activity is completed.

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

open

MELAS / m.3243A>G Program

An open patient partnership program for MELAS and m.3243A>G-related mitochondrial disease.

Participants
0

Observed program count

Program goal
$16,000,000

Multi-year planning goal

Goal / participant
$100,000

Planning estimate

Mito Map synced
0

Synced summary count

RAI
0

Derived Research Asset Index

Trial-ready
0

Derived from synced summaries

Longitudinal
0

Derived from synced summaries

Cohort quality
0

Completeness + freshness + verification

Avg score
0

Derived from latest contribution scores

Measured function
0

Synced summary count

Program details

MELAS / m.3243A>G Program

Multi-year program goal
$16,000,000
Goal / participant
$100,000
Potential participants
160
Expected active
96
Engagement estimate
60%
Max credits/person
1,590
Program credit pool
254,400

Community goal

Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.

Credit pool estimate

160 participants x 1,590 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

90 credits

Join MELAS and start readiness updates. Credits fill gradually as eligible activity is completed.

Sync

250 credits

Complete m.3243A>G readiness summary. Credits fill gradually as eligible activity is completed.

Interact

500 credits

Keep monthly MELAS summaries current. Credits fill gradually as eligible activity is completed.

Sustain

750 credits

Help prepare MELAS research data. Credits fill gradually as eligible activity is completed.

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

open

OPA1 Discovery Program

An open patient partnership program focused on OPA1-related mitochondrial disease.

Participants
0

Observed program count

Program goal
$6,750,000

Multi-year planning goal

Goal / participant
$54,000

Planning estimate

Mito Map synced
0

Synced summary count

RAI
0

Derived Research Asset Index

Trial-ready
0

Derived from synced summaries

Longitudinal
0

Derived from synced summaries

Cohort quality
0

Completeness + freshness + verification

Avg score
0

Derived from latest contribution scores

Measured function
0

Synced summary count

Program details

OPA1 Discovery Program

Multi-year program goal
$6,750,000
Goal / participant
$54,000
Potential participants
125
Expected active
75
Engagement estimate
60%
Max credits/person
1,150
Program credit pool
143,750

Community goal

Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.

Credit pool estimate

125 participants x 1,150 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

60 credits

Join OPA1 and start vision updates. Credits fill gradually as eligible activity is completed.

Sync

180 credits

Complete OPA1 readiness summary. Credits fill gradually as eligible activity is completed.

Interact

360 credits

Keep OPA1 summaries current. Credits fill gradually as eligible activity is completed.

Sustain

550 credits

Help prepare OPA1 research data. Credits fill gradually as eligible activity is completed.

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

open

POLG Discovery Program

A patient partnership program focused on POLG-related mitochondrial disease.

Participants
0

Observed program count

Program goal
$5,625,000

Multi-year planning goal

Goal / participant
$45,000

Planning estimate

Mito Map synced
0

Synced summary count

RAI
0

Derived Research Asset Index

Trial-ready
0

Derived from synced summaries

Longitudinal
0

Derived from synced summaries

Cohort quality
0

Completeness + freshness + verification

Avg score
0

Derived from latest contribution scores

Measured function
0

Synced summary count

Program details

POLG Discovery Program

Multi-year program goal
$5,625,000
Goal / participant
$45,000
Potential participants
125
Expected active
75
Engagement estimate
60%
Max credits/person
1,280
Program credit pool
160,000

Community goal

Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.

Credit pool estimate

125 participants x 1,280 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

80 credits

Join POLG and confirm readiness source. Credits fill gradually as eligible activity is completed.

Sync

200 credits

Complete POLG readiness summary. Credits fill gradually as eligible activity is completed.

Interact

400 credits

Keep POLG summaries current. Credits fill gradually as eligible activity is completed.

Sustain

600 credits

Help prepare POLG research data. Credits fill gradually as eligible activity is completed.

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

open

TWNK Discovery Program

An open patient partnership program focused on TWNK-related mitochondrial disease.

Participants
1

Observed program count

Program goal
$3,750,000

Multi-year planning goal

Goal / participant
$44,118

Planning estimate

Mito Map synced
1

Synced summary count

RAI
14

Derived Research Asset Index

Trial-ready
0

Derived from synced summaries

Longitudinal
1

Derived from synced summaries

Cohort quality
5

Completeness + freshness + verification

Avg score
0

Derived from latest contribution scores

Measured function
1

Synced summary count

Program details

TWNK Discovery Program

Multi-year program goal
$3,750,000
Goal / participant
$44,118
Potential participants
85
Expected active
51
Engagement estimate
60%
Max credits/person
950
Program credit pool
80,750

Community goal

Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.

Credit pool estimate

85 participants x 950 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

50 credits

Join TWNK and start priority updates. Credits fill gradually as eligible activity is completed.

Sync

150 credits

Complete TWNK readiness summary. Credits fill gradually as eligible activity is completed.

Interact

300 credits

Keep TWNK summaries current. Credits fill gradually as eligible activity is completed.

Sustain

450 credits

Help prepare TWNK research data. Credits fill gradually as eligible activity is completed.

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

planning

LHON / Mitochondrial Optic Neuropathy Program

A planning-stage patient partnership program for LHON and related mitochondrial optic neuropathy communities.

Participants
0

Observed program count

Program goal
$8,000,000

Multi-year planning goal

Goal / participant
$44,444

Planning estimate

Mito Map synced
0

Synced summary count

RAI
0

Derived Research Asset Index

Trial-ready
0

Derived from synced summaries

Longitudinal
0

Derived from synced summaries

Cohort quality
0

Completeness + freshness + verification

Avg score
0

Derived from latest contribution scores

Measured function
0

Synced summary count

Program details

LHON / Mitochondrial Optic Neuropathy Program

Multi-year program goal
$8,000,000
Goal / participant
$44,444
Potential participants
180
Expected active
117
Engagement estimate
65%
Max credits/person
1,150
Program credit pool
207,000

Community goal

Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.

Credit pool estimate

180 participants x 1,150 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

60 credits

Join LHON and confirm readiness source. Credits fill gradually as eligible activity is completed.

Sync

180 credits

Complete optic neuropathy readiness summary. Credits fill gradually as eligible activity is completed.

Interact

360 credits

Keep LHON summaries current. Credits fill gradually as eligible activity is completed.

Sustain

550 credits

Help prepare LHON research data. Credits fill gradually as eligible activity is completed.

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

planning

m.3243A>G Multisystem / MIDD Program

A planning-stage program for people with m.3243A>G multisystem disease, including MIDD, hearing, cardiac, renal, muscle, and neurologic manifestations beyond classic MELAS.

Participants
0

Observed program count

Program goal
$14,000,000

Multi-year planning goal

Goal / participant
$58,333

Planning estimate

Mito Map synced
0

Synced summary count

RAI
0

Derived Research Asset Index

Trial-ready
0

Derived from synced summaries

Longitudinal
0

Derived from synced summaries

Cohort quality
0

Completeness + freshness + verification

Avg score
0

Derived from latest contribution scores

Measured function
0

Synced summary count

Program details

m.3243A>G Multisystem / MIDD Program

Multi-year program goal
$14,000,000
Goal / participant
$58,333
Potential participants
240
Expected active
156
Engagement estimate
65%
Max credits/person
1,590
Program credit pool
381,600

Community goal

Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.

Credit pool estimate

240 participants x 1,590 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

90 credits

Join m.3243A>G multisystem program. Credits fill gradually as eligible activity is completed.

Sync

250 credits

Complete m.3243A>G multisystem readiness summary. Credits fill gradually as eligible activity is completed.

Interact

500 credits

Keep m.3243A>G summaries current. Credits fill gradually as eligible activity is completed.

Sustain

750 credits

Help prepare m.3243A>G research data. Credits fill gradually as eligible activity is completed.

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

planning

MERRF / m.8344A>G Program

A planning-stage program for MERRF, m.8344A>G, and related myoclonic epilepsy mitochondrial disease communities.

Participants
0

Observed program count

Program goal
$5,000,000

Multi-year planning goal

Goal / participant
$55,556

Planning estimate

Mito Map synced
0

Synced summary count

RAI
0

Derived Research Asset Index

Trial-ready
0

Derived from synced summaries

Longitudinal
0

Derived from synced summaries

Cohort quality
0

Completeness + freshness + verification

Avg score
0

Derived from latest contribution scores

Measured function
0

Synced summary count

Program details

MERRF / m.8344A>G Program

Multi-year program goal
$5,000,000
Goal / participant
$55,556
Potential participants
90
Expected active
59
Engagement estimate
65%
Max credits/person
1,350
Program credit pool
121,500

Community goal

Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.

Credit pool estimate

90 participants x 1,350 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

70 credits

Join MERRF and confirm readiness source. Credits fill gradually as eligible activity is completed.

Sync

210 credits

Complete MERRF readiness summary. Credits fill gradually as eligible activity is completed.

Interact

420 credits

Keep MERRF summaries current. Credits fill gradually as eligible activity is completed.

Sustain

650 credits

Help prepare MERRF research data. Credits fill gradually as eligible activity is completed.

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

planning

MT-ATP6 / NARP / Leigh Spectrum Program

A planning-stage program for MT-ATP6, NARP, and related Leigh spectrum mitochondrial disease communities.

Participants
0

Observed program count

Program goal
$6,000,000

Multi-year planning goal

Goal / participant
$60,000

Planning estimate

Mito Map synced
0

Synced summary count

RAI
0

Derived Research Asset Index

Trial-ready
0

Derived from synced summaries

Longitudinal
0

Derived from synced summaries

Cohort quality
0

Completeness + freshness + verification

Avg score
0

Derived from latest contribution scores

Measured function
0

Synced summary count

Program details

MT-ATP6 / NARP / Leigh Spectrum Program

Multi-year program goal
$6,000,000
Goal / participant
$60,000
Potential participants
100
Expected active
65
Engagement estimate
65%
Max credits/person
1,550
Program credit pool
155,000

Community goal

Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.

Credit pool estimate

100 participants x 1,550 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

75 credits

Join MT-ATP6 and NARP spectrum program. Credits fill gradually as eligible activity is completed.

Sync

225 credits

Complete MT-ATP6 spectrum readiness summary. Credits fill gradually as eligible activity is completed.

Interact

500 credits

Keep MT-ATP6 summaries current. Credits fill gradually as eligible activity is completed.

Sustain

750 credits

Help prepare MT-ATP6 research data. Credits fill gradually as eligible activity is completed.

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

planning

Single Large-Scale mtDNA Deletion Program

A planning-stage program for Kearns-Sayre, CPEO/CPEO-plus, Pearson syndrome, and related single large-scale mtDNA deletion syndromes.

Participants
0

Observed program count

Program goal
$7,000,000

Multi-year planning goal

Goal / participant
$58,333

Planning estimate

Mito Map synced
0

Synced summary count

RAI
0

Derived Research Asset Index

Trial-ready
0

Derived from synced summaries

Longitudinal
0

Derived from synced summaries

Cohort quality
0

Completeness + freshness + verification

Avg score
0

Derived from latest contribution scores

Measured function
0

Synced summary count

Program details

Single Large-Scale mtDNA Deletion Program

Multi-year program goal
$7,000,000
Goal / participant
$58,333
Potential participants
120
Expected active
78
Engagement estimate
65%
Max credits/person
1,550
Program credit pool
186,000

Community goal

Estimated community size needed for useful research. Expected active counts estimate how many members may stay engaged over time.

Credit pool estimate

120 participants x 1,550 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

75 credits

Join mtDNA deletion program. Credits fill gradually as eligible activity is completed.

Sync

225 credits

Complete deletion syndrome readiness summary. Credits fill gradually as eligible activity is completed.

Interact

500 credits

Keep deletion syndrome summaries current. Credits fill gradually as eligible activity is completed.

Sustain

750 credits

Help prepare deletion syndrome research data. Credits fill gradually as eligible activity is completed.

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

Open opportunities

Active ways patients can participate

Learn about consent
Leigh Syndrome Program

Share a Leigh syndrome care update

Sponsor: Mito Discovery Alliance

15 minutes per update - 75 contribution credits

Privacy: coded or de-identified where applicable

MELAS / m.3243A>G Program

MELAS / m.3243A>G Longitudinal Check-In

Sponsor: Mito Discovery Alliance

15 minutes monthly - 90 contribution credits

Privacy: coded or de-identified where applicable

OPA1 Discovery Program

Keep OPA1 vision and fatigue updates current

Sponsor: Mito Discovery Alliance

12 minutes to start, then periodic refresh - 60 contribution credits

Privacy: de-identified aggregate reporting

POLG Discovery Program

Check your POLG profile details

Sponsor: Mito Discovery Alliance

20 minutes one time - 80 contribution credits

Privacy: Alliance summary data only

TWNK Discovery Program

Keep TWNK priorities current

Sponsor: Mito Discovery Alliance

10 minutes to start, then periodic refresh - 50 contribution credits

Privacy: de-identified aggregate reporting

All Mitochondrial Disease Community

Mitochondrial Natural History Readiness Study

Sponsor: TBD

15 minutes quarterly - 100 contribution credits

Privacy: coded or de-identified where applicable

For members

Your account unlocks a personal dashboard.

After joining, members can access their private dashboard at /dashboard to see program enrollment, Mito Map sync status, contribution score, MDA acknowledgements, research opportunities, impact, and patient success status.

Come back when symptoms, care, or goals change so your next summary stays current. MDA shows the aggregate progress; Mito Map keeps the detailed record.