Patients are partners
Members are not passive data sources. They help shape registry priorities, consent expectations, research readiness, and the questions that matter most to daily life.
About
A patient-led alliance for mitochondrial discovery.
Mito Discovery Alliance is the patient-facing participation organization connected to Precision Mito and Mito Map. It exists to help people living with mitochondrial disease contribute to research in a way that is transparent, consent-driven, and worthy of trust.
Our mission
Make patient partnership part of the research infrastructure.
Mitochondrial disease research needs better longitudinal data, clearer patient priorities, and faster ways to identify research-ready communities. Patients and caregivers already carry much of that knowledge. The Alliance gives that knowledge a structured home.
We coordinate disease programs, dynamic consent, registry health reporting, patient advisory input, research opportunity matching, and future patient success programs if qualifying revenue ever exists.
What makes this different
Built around participation, not extraction.
Consent is specific
Research opportunities are presented clearly so members can opt in, decline, or withdraw where program rules allow. Consent history is stored as an auditable record.
Data is minimized
Mito Map remains the source for detailed health tracking. The Alliance stores membership, program, consent, contribution, and derived summary information rather than raw clinical records by default.
Progress is visible
Public dashboards show aggregate participation, program status, open opportunities, transparency targets, and registry health without exposing member identities.
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.
Coordinates participation metadata, disease program enrollment, dynamic consent, contribution scoring, research opportunities, 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.
Research opportunity matching
Members can review surveys, registry readiness efforts, natural history studies, and future partner-sponsored opportunities through dynamic consent.
Patient control
Members should 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 layer 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 registries, better consent infrastructure, more useful patient-reported priorities, and a transparent path for patients to participate 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, dynamic consent, and careful language that keeps the mission centered on discovery and patient partnership.