An open patient partnership program for MELAS and m.3243A>G-related mitochondrial disease.
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 credits1,590
Complete every credit milestone to reach this total. Credits are added as each step is completed and checked.
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
1,590
Complete all listed milestones
Planned participants
160
A planning goal, not current enrollment
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
MELAS / m.3243A>G Program
Credit pathways
Earn up to 1,590 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 credits1,590
Complete every credit milestone to reach this total. Credits are added as each step is completed and checked.
Step 1
+90credits
90 total after this step
Join MELAS and start readiness updates
Complete every required item below for this milestone:
Join the MELAS / m.3243A>G program
Complete the first Mito Map or approved readiness update
Authorize m.3243A>G diagnosis-readiness summaries if available
View exact instructions and links →
Step 2
+250credits
340 total after this step
Complete m.3243A>G readiness summary
Complete every required item below for this milestone:
Authorize Mito Map or approved summaries for genetics, diagnosis, and longitudinal-readiness status
Keep detailed symptom, medication, lab, imaging, record, and care-use data in Mito Map
Review m.3243A>G summary gaps when invited
View exact instructions and links →
Step 3
+500credits
840 total after this step
Keep monthly MELAS summaries current
Complete every required item below for this milestone:
Complete at least three Mito Map or approved monthly updates
Refresh symptom-burden, energy, function, lab-coverage, and care-use summary signals
Authorize function-testing, wearable-summary, or clinician-note summary signals if available
View exact instructions and links →
Step 4
+750credits
1,590 total after this step
Help prepare MELAS research data
Complete every required item below for this milestone:
Keep six months of monthly MELAS updates current
Respond to at least one MELAS research-prep request when invited
Help review patient priorities, disease-course information, or missing diagnosis information when invited
View exact instructions and links →
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.
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.