Mito Discovery Alliance · Patient Stories

Your story can move understanding forward.

Apply to share your experience with mitochondrial disease, caregiving, diagnosis, fragmented care, or research participation. We’ll help shape it with you—and you decide how you’re identified and where it may appear.

Apply to share your story See how it works

You stay in controlApplying does not give us permission to publish.

Choose your privacyUse your name, first name only, or remain anonymous.

No perfect draft neededWrite your own story or let us interview you.

Stories we want to hear

Tell the part only lived experience can show.

You do not need a dramatic ending, a confirmed genetic diagnosis, or a success story. Honest accounts of uncertainty, daily adaptation, care navigation, family life, and research participation all matter.

The road to answers

What it took to be heard, evaluated, diagnosed—or to continue living without a clear diagnosis.

Life between appointments

The work of managing energy, symptoms, school, employment, relationships, caregiving, and changing function.

Why participation matters

Your hopes, boundaries, and concerns about contributing information to advocacy, care, or research.

Your story, your terms

Interest is not consent.

This application only lets MDA contact you. We will not publish your words, name, photograph, Mito Map information, or medical details based on this form alone.

1. ApplyTell us briefly what you may want to share and how you prefer to participate.

2. Talk with usIf the story is a fit, we’ll arrange a conversation and agree on scope and privacy.

3. Review the finished storyYou will see the story before publication and can request changes or decline to proceed.

4. Grant specific permissionPublication, social media, photography, and external media each require clear approval.

Story application

Start with a few details.

This usually takes five minutes. Please do not include medical records, birth dates, addresses, account numbers, or other sensitive identifiers.

Mito Map is optional. You do not need to use it or share information from it to apply.

Your name

Your connection to the story

Who is the story about?

What story might you want to share?Avoid names of clinicians, medical-record numbers, or detailed identifying information.

What do you hope sharing could accomplish? (optional)

How would you prefer to share?

Current privacy preference

These preferences are not publication consent. They simply help us understand what you may be comfortable considering.

Where might you consider sharing it? (optional)

MDA website, newsletter, or educational materials MDA social media An outside publication, podcast, or journalist—with separate approval first I confirm that I am at least 18 years old. If this story involves a child or another adult, I understand additional permission may be required. I agree that Mito Discovery Alliance may contact me about this story application. I understand that applying does not guarantee publication and does not authorize publication.

Your application is reviewed by the MDA team. It is separate from research consent and from any consent you may have given in Mito Map. See our Privacy Policy.