Every family's experience is a piece of the mosaic.
together we see the full picture.
This isn't live yet. We'll only build it if enough families want it.
are you in?
We have all been there.
The fear.
The loneliness.
The endless unknowns.
But we don't have to do it alone anymore!This is our community.
A place where we share what we’ve learned, so no one has to start from zero.
If it can help even one person feel less alone, we've succeeded.Yes, each of our children is unique, and these conditions are ranges.
But the more information we share, the clearer the picture becomes:
• What to look out for
• What to fear (and what not to)
• What has helped othersBy ourselves, we're alone. Together, we can get through anything.
When your child is diagnosed with a rare condition, doctors often can't answer your most important questions: When will they hit milestones? What medical issues should you watch for? What will the future look like?Doctors often can’t tell you.
And the research that exists is heartbreakingly limited - sometimes just one or two studies based on a handful of children, if we're lucky.
Most organizations and specialists end up quoting the same small papers, because that’s all there is.Research platforms exist, but they're designed for scientists and drug developers - not for families who need answers now.You turn to Facebook, hoping to learn from others, but information is scattered and impossible to search. The same questions are asked again and again.And if you don't use Facebook, you might never find your community at all.So much about our children simply isn't known. No one is collecting the full picture, and it leaves families trying to fill in the gaps on their own.
Here's what we're building:A platform where families anonymously complete questionnaires about their experiences. We aggregate the responses by diagnosis so you can see:✓ What percentage of kids hit milestones at different ages
✓ How common specific medical issues are
✓ Which therapies families found most helpful
✓ The real range of outcomes - not just one storyThink: crowdsourced data, not a forum.
📊 See the Range
Not just one story - see experiences from 10, 20, 50+ families with the same condition🔍 Actually Searchable
Find what you need without scrolling through years of Facebook posts🔒 Your Privacy Protected
Anonymous sharing. No data sold to pharmaceutical companies. Ever.
👋 You just got the diagnosis and feel completely alone.
👋 You're wondering "is this normal?" and can't find answers anywhere.
👋You want to see the full picture- not just one story, but the range of what's possible.
👋You remember how terrifying the early days were and want to help the next family.
👋You're tired of Googling at 2am and finding nothing useful.
👋You're ready to help others find what you couldn't.
The day you got your child's diagnosis, you could search their specific condition and see:
✓ 47 families have shared their experiences
✓ Most kids walked between 18-36 months
✓ 12 families had the same scary symptom - all turned out fine
✓ Physical therapy started early made the biggest differenceThat's what we're building.
This only works if we're in it together.
We need families willing to share their experiences - not just read them.
Sign up to show there's demand.
Let's be the help we wish we'd had.
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.
Reach out at [email protected]
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