WELCOME TO
Crowdsourced experiences from families with rare conditions.
Aggregated into searchable data.
By families, for families.
HOW DOES THIS NOT ALREADY EXIST?!
This isn't live yet. We'll only build it if enough families want it.
We’ll only email you about this project. We never share or sell your information.
See our full privacy policy below.
You get your child's diagnosis. The doctor says they don't know what the future holds - when milestones might happen, what challenges to expect, if they'll ever tie their shoes.That night, you search desperately for answers.
You find the same small medical research quoted everywhere, Facebook groups you can't search, and research written for scientists - not parents.And then imagine you find this:
A searchable database where families with your child's exact diagnosis have shared their experiences.47% of children walked by 24 months
28% were verbal by 18 months
12 families reported the same scary symptom - all turned out fine
Early physical therapy made the biggest differenceReal data. Real families. Real knowledge.This is what we're building.
1. Sign up to show your interest.2. If enough families want this, we'll send anonymous questionnaires about your experiences - milestones reached, medical findings, what helped, what didn't.3. We aggregate the responses by diagnosis. No individual stories shared - just patterns:
"X% of families experienced this by age Y"You contribute anonymously. You search by diagnosis. You see the full picture.
✓ Completely anonymous - No names, no identifying information
✓ By families, for families - Not for research. For answers.
✓ Organized by diagnosis - Find what's relevant to YOUR child
✓ Shows the range - Not just one story, but patterns across many families
Sign up now. We'll reach out in early 2026 - if enough families want this, we're making it happen.
Together, we complete the picture.
By signing up, you agree to our privacy policy below.---Privacy Policy
We collect your email address only to contact you about updates related to The Rare Mosaic project.
We never share or sell your information.
You can request removal at any time by emailing [email protected].
Reach out at [email protected]
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