Patient and family support
Use established mitochondrial-disease organizations for helplines, peer groups, local connections, education, and practical navigation.
Explore UMDF supportCommunity
Connect with people who care about mitochondrial disease.
Use this page to read patient stories, join updates, register interest in events, or share a story for review. Please keep public submissions non-sensitive. Do not put private health details in public posts or forms. Use secure member tools such as Mito Map for detailed health information and private peer features.
Find the right kind of support
Practical paths for patients, caregivers, and families.
One-to-one and group programs
MitoAction offers support programs, resources, events, and practical information for people affected by mitochondrial disease.
Explore MitoActionPeer-to-peer connection
Mito Match helps people affected by mitochondrial disease find lived-experience support and mentor-style connections. It is for peer connection, not medical advice or private records.
Open Mito MatchCaregiver resources
Caregivers can join events, contribute feedback, help maintain a profile with permission, and seek support for their own needs.
Caregiver guidanceResearch participation
Registry or study participation is separate from peer support and always voluntary.
Registry informationCaregivers
Support the person without losing sight of yourself.
Caregivers may help organize questions, attend events, keep permitted information current, and contribute their own experience when a program allows it. The patient's preferences and legal authority still govern access and sharing.
Ask what kind of help the person wants before sharing their story.
Keep emergency plans and clinical questions with the care team.
Use low-burden event and feedback options when time or energy is limited.
Seek caregiver-specific emotional and practical support; MDA peer spaces do not replace professional care.
Urgent help and crisis boundary
This community is not an emergency or crisis service.
For a medical emergency, call local emergency services. In the United States, call or text 988 for immediate mental-health crisis support. Outside the U.S., use your local emergency or crisis service. Do not wait for a community reply to an urgent safety or medical concern.
Moderation
What moderated participation means
Public submissions are reviewed before publication when the workflow allows.
Moderators may remove identifying records, medical advice, harassment, promotion, or unsafe claims.
Moderation is not continuous clinical monitoring and cannot evaluate symptoms or treatment decisions.
Conduct, privacy, and safety concerns can be sent through Contact.
Public community
Stay connected without sharing private records.
Patient stories
Read or submit reviewed stories that help families feel less alone.
Events and webinars
Join listening sessions, research updates, peer circles, and education sessions.
Simple advocacy
Share priorities, invite clinicians or researchers, and help others find clear information.
Community feedback
Patients and caregivers can help improve language, accessibility, events, and support.
Patient story program
Tell one moment, one lesson, and one hope.
Stories can help families feel less alone, show clinicians and researchers what matters in daily life, and give supporters a human reason to stay involved. You do not need to tell your full medical history or write a polished essay.
1. Submit your story
Share one grounded moment, what it taught you, and what you hope another family, clinician, or researcher will understand.
2. MDA reviews for safety
A community or content reviewer checks for privacy risks, medical-advice issues, raw records, and details that should stay out of public posts.
3. You review the exact draft
Choose how you are named, what stays private, and whether a written story, quote, photo, audio, or video may be used.
4. You approve every channel
Nothing is published from this form alone. MDA asks separately before using the final story on the website, newsletter, social media, at events, or in partner materials.
What to share
A useful story can be short and focused.
Write your story in 300-700 words, or ask MDA for a brief interview. MDA can shape your story into a draft and send it back for your approval.
One moment: a daily-life, diagnosis, care-navigation, research, or community experience.
One lesson: what was difficult, what helped, or what you wish people understood sooner.
One hope: what you want another family, clinician, researcher, or supporter to do differently.
Your boundaries: tell us what must stay private and how, if at all, you want to be identified.
Where stories go
The MDA website is the home; every other use requires approval.
If you approve publication, MDA keeps one reviewed website story as the source of truth. Shorter versions link back to it and cannot add new details.
MDA website
The complete approved story lives on the MDA community or story page, where corrections and withdrawal can be managed.
Newsletter
A short approved excerpt and quote can link readers to the complete story.
Facebook and LinkedIn
An approved quote, image, or captioned clip can reach patients, families, clinicians, researchers, and supporters.
Events and presentations
MDA uses anonymous themes by default. Named excerpts, media pitches, fundraising, partner, or research use require separate permission.
Facebook sharing
Use Facebook to invite stories and amplify approved ones.
The website should stay the home for story submissions and review. Facebook should point people back to this page, invite low-pressure prompts, and avoid collecting private medical details in comments.
Pinned post: invite patients and caregivers to share through the website form.
Weekly prompt: ask one simple question, then direct private stories to the form.
Monthly feature: share one approved quote, story link, or short video with confirmed permission.
Comment rule: do not post raw records, genetic reports, lab results, contact details, or urgent medical questions in Facebook comments.
Ways to stay involved
Simple actions keep the loop moving between major milestones.
Subscribe
Receive community updates, event invitations, impact notes, and research participation news.
Attend a session
Join listening sessions, office hours, or peer circles when topics match your interests and availability.
Share a reviewed story
Submit a story for review only if and when you are comfortable with the publication process.
Invite a clinician
Point clinicians to the public handout, FAQ, research, transparency, and impact pages.
Review impact updates
Look for aggregate progress, milestones, publications, opportunities, and governance updates without exposing private records.
Start in Mito Map
You do not need a perfect record to begin. Start with a basic profile or a small current update, then add private details later in Mito Map when you are ready.
Community rhythm
What changes weekly, monthly, and quarterly.
Use this rhythm to check for new updates, event dates, impact snapshots, and the right time to refresh your private Mito Map profile.
Weekly: review new story and event requests, answer open questions, and surface accessibility issues.
Monthly: share a short community update, host an office hour or listening session, and summarize common themes.
Quarterly: refresh ambassador guidance, event ideas, and governance themes so the community stays useful and respectful.
Peer support
Peer support should be practical, consent-aware, and private when needed.
Ambassador review
Experienced patients and caregivers can help refine language, accessibility, event ideas, and what new members need to feel welcome.
Peer connection
Mito Match can help people find one-to-one lived-experience support and community introductions. It is for connection, not medical advice, clinical triage, or research enrollment.
Open Mito MatchPrivate handoff
If someone needs one-to-one support, Mito Map is the place for account-based peer features, profile updates, and private follow-up when available.
Community guardrails
Public posts should stay non-sensitive and avoid raw records, labs, genetic reports, urgent questions, or identifying another person without permission.
Accessibility first
Offer plain language, flexible timing, and low-burden ways to participate so more families can stay involved over time.
Patient stories
Story formats ready for review and consent.
From scattered notes to a clearer research profile
A caregiver uses Mito Map to organize symptoms, appointments, genetics, and day-to-day changes before deciding which research opportunities feel appropriate.
Making rare experience visible
A young adult with mitochondrial disease shares why longitudinal updates, fatigue tracking, and plain-language consent matter when research asks for participation.
A clinician referral that did not add another burden
A family learns about MDA from a clinician, reviews the trust model publicly, then joins Mito Map only when they are ready.
Events and webinars
Repeat touchpoints for learning, listening, and peer support.
Peer support office hours
A practical session for patients and caregivers who want help understanding profiles, consent choices, community updates, and the Mito Map handoff.
Community listening webinar
Researchers and community advisors share what has been learned, what is still unknown, and what support the community wants next.
Ambassador and caregiver workshop
A moderated session where experienced members help shape story review, accessibility, event ideas, and ambassador language.
Community guidelines
A public standard for respectful participation.
Protect privacy. Do not share another person's diagnosis, story, records, or contact information without permission.
Use lived experience generously, but do not give medical advice or pressure someone toward a treatment, study, or consent choice.
Assume different access needs. Keep language plain, respectful, and welcoming to patients, caregivers, bereaved families, clinicians, and researchers.
Disclose conflicts when discussing products, companies, studies, fundraising, or professional interests.
Report safety, privacy, or conduct concerns to the Alliance team so they can be reviewed outside public threads.
Event and story prompts
Questions and story shapes that help the community teach us what to do next.
Ask one better question
At the next community session, ask what would make joining feel safer, easier, or more useful for families.
Register for an eventShare a story shape
A strong story can cover what changed, what helped, and what you wish the next family knew before they started looking for answers.
Share a storyKeep people in the loop
Use the newsletter form to keep receiving community updates, event invitations, impact notes, and research participation news.
Get updatesCommunity to Mito Map
Public connection can lead to private value.
Public stories and events create trust.
Mito Map profiles create personalization.
Longitudinal updates help researchers understand change over time and make your next summary more useful.
Community feedback improves surveys, consent flows, and study design.
Return for the next update
Come back for the latest story, event date, or progress note.
Community pages work best when people know what will be new next time. Check here for reviewed stories, upcoming events, short impact updates, and the newsletter if you want reminders without creating an account. If your private details changed, update them in Mito Map instead.
Stories: see reviewed stories and fresh prompts.
Events: find listening sessions, webinars, and advocacy dates.
Progress: read short public milestones and impact notes.
Newsletter: get the next update without signing in.
Newsletter
Get updates without creating an account.
Sign up for event announcements, community updates, impact notes, and research participation news.
Contact form
Story submission form
Contact form