Ask privacy questions
Patients and families can contact MDA with privacy, consent, and data-use questions.
Contact MDAPrivacy principles
How the public MDA website is designed to protect privacy.
This page explains, in plain language, what the public MDA website collects, what belongs in Mito Map, and how the public routing layer stays separate from private consent and health details.
What MDA stores
The public website is intentionally lightweight.
Public inquiries, newsletter subscriptions, story submissions, event registrations, referrals, proposals, and partner/donation interest.
Lightweight participation details and only the summary fields a member has approved for sync from Mito Map.
Aggregate impact metrics that do not reveal personal health records.
Admin notes and audit logs needed to operate the website responsibly.
What stays out by default
Mito Map remains the detailed health data home.
MDA does not use public forms as a place for raw clinical records, genetic reports, lab files, wearable streams, or full longitudinal symptom histories.
MDA does not share identifiable patient data with partners through public website forms.
MDA does not send sensitive health data to analytics tools.
Detailed consent choices, patient-level matching, and other private follow-up stay in Mito Map.
Any expanded data use requires purpose-specific review, consent, and data minimization.
Referral privacy
Clinician referrals stay intentionally lightweight.
Referral forms are for follow-up and invite support, not for full chart transfer.
Clinicians should avoid submitting names, dates of birth, detailed records, or urgent medical questions beyond what is required for contact.
Patients can always review the public explanation before creating a profile or continuing into Mito Map.
Public pages explain the boundary so patients and clinicians can make the same decision with the same information.
Rights and controls
You can ask questions and change future participation choices.
Change future choices
Members can update future participation and consent choices where program rules allow. Saying no to one request does not change membership or unrelated opportunities.
Open member portalUnderstand public metrics
Public dashboards show aggregate progress, not identifiable patient records.
View impact