Public first
People can learn, compare options, and ask questions before sharing anything sensitive.
About
A patient-led community for mitochondrial disease research.
Mito Discovery Alliance helps people affected by mitochondrial disease learn about research, join programs, and decide what they want to share. It is connected to Precision Mito, Mito Map, and Mito Match, but this website is the public starting point. That keeps the first explanation short: learn here, then use Mito Map later if you want private health details and consent tools.
If you are not sure where to begin, start at Patients & Families, use Community for support between visits, and use Contact for practical questions.
Our mission
Our mission is to unite people affected by mitochondrial disease with researchers, clinicians, and partners to accelerate meaningful discovery—ensuring that every step is guided by patient priorities, informed consent, transparency, and respect.
Mitochondrial disease research needs clearer patient priorities, better long-term information, and easier ways for families to find the right opportunities. MDA helps organize public programs, plain-language updates, research review, community input, and responsible partnerships. Mito Map remains the private place for detailed health profiles and consent choices.
Patients should understand what is being asked before they share sensitive information. Researchers and partners should explain the purpose, burden, privacy limits, and value back to the community.
Trust first
Start with a simple page, not a big ask.
Patients can read the public explanation first and decide whether to continue.
Clinicians can share the page or handout without sending charts, labs, or genetic reports.
Private health details, granular consent, and patient-level follow-up stay in Mito Map.
MDA stays educational and participation-focused, not a substitute for medical advice.
Share MDA
Give people a simple starting point.
If MDA is useful to you, send people to the page that matches what they need. Keep private health details in Mito Map and use MDA for the public story, community updates, and next-step links.
Patients and families can start at Patients & Families.
Clinicians can use Clinicians for the referral path and handout.
Stories, events, and newsletter signups belong on Community.
Supporters can review Partner With Us or Donate.
What makes MDA easier to explain
One public front door, one private home for health details.
MDA is easier to compare with a generic forum or research portal because it has clear owners, review steps, and public progress pages, while private records stay in Mito Map.
Private later
Mito Map keeps detailed health tracking, consent choices, and personal follow-up separate from the public site.
Reviewed next steps
Research and partner requests move through review, so access comes from process instead of ad hoc asks.
Value comes back
Public dashboards show aggregate progress, open opportunities, and reviewed publications without exposing member identities.
Free to start
Joining MDA stays free, so people can decide whether the Alliance fits before they share private health details.
Patients are partners
The site is built to explain the path clearly, not to turn patients into a data source.
How to read public progress
Each public number should say what kind of number it is.
These headline cards mix current counts, synced summaries, calculated scores, and planning goals. The note under each number tells you which kind you are looking at so public progress stays easy to read on the first pass.
Total participants
100Observed aggregate count
Mito Map synced
100Synced summary count
Avg RAI
4Derived from current program summaries
Open opportunities
6Observed open request count
Program goal
$90,000,000Planning goal, not a promise
Source labels
Plain-language rules for the public dashboard.
Observed: a current Alliance count, like participants or open opportunities.
Synced summary: an approved Mito Map summary total, not a raw chart or full history.
Derived: a score calculated from existing records, such as Research Asset Index.
Planning: a goal or estimate for future work, not a promise, payout, or current result.
Precision Mito and Mito Map
Connected, but with distinct responsibilities.
Supports the broader mitochondrial disease technology and research ecosystem.
Remains the home for detailed health tracking, symptoms, labs, wearables, genetics, functional data, and patient insights.
Provides a related connection point for mitochondrial disease matching and discovery efforts.
Coordinates participation details, disease program enrollment, opportunity acknowledgements, contribution summaries, research marketplace workflows, and public transparency.
Disease communities
One Alliance, many mitochondrial paths.
Alliance-wide participation
People with any mitochondrial disease or suspected mitochondrial condition can join the broad community.
Disease-specific programs
Open programs include POLG, TWNK, OPA1, MELAS / m.3243A>G, and Leigh syndrome, with room for more communities over time.
Governed opportunity review
Members can review Alliance-approved check-ins, natural history studies, and future partner-sponsored opportunities, while Mito Map remains the patient-level matching and granular consent system.
Patient control
Members can understand what is happening and why.
Members can choose a primary disease program.
Members can review and update consent preferences.
Members can respond to research opportunities one by one.
Members can see their private contribution dashboard after account login.
Members can view public aggregate dashboards without exposing private details.
Members can withdraw according to applicable program rules.
Guardrails
What the Alliance does not do.
It does not provide medical advice, diagnosis, or treatment recommendations.
It does not guarantee access to studies, trials, treatments, payments, or other benefits.
It does not frame participation as an investment product, ownership stake, dividend, token, or guaranteed return.
It does not publicly expose member identities or detailed medical records.
It does not sync raw health data from Mito Map unless a specific consented use requires it.
Long-term vision
A trusted patient community for mitochondrial discovery.
The long-term goal is to help every mitochondrial disease community become easier to understand, easier to support, and easier to include in research. That means stronger patient registries, better consent tooling in Mito Map, more useful patient-priority signals, and a transparent path for patients to share in the success of research they help make possible if qualifying revenue exists.
The Alliance is starting with practical foundations: open disease programs, public dashboards, member accounts, contribution summaries, governed opportunity review, and careful language that keeps the mission centered on discovery and patient partnership.