Join the waitlist
For rare & undiagnosed diseases

You are not alone in the search for answers.

The journey to a rare-disease diagnosis takes an average of 4.7 years and eight or more specialists. Kindravia brings the search into one place — a community you can ask for insight, people matched to your symptoms and genes, and health data that stays yours.

Join the waitlist See how it works

Create · Connect · Explore · Discover — together.

300M
people live with a rare disease worldwide
1 in 10
Americans — about 30 million people
4.7 yrs
average time to a diagnosis
73%
are misdiagnosed at least once along the way

Sources: Nguengang Wakap et al., Eur. J. Human Genetics (2020); EURORDIS Rare Barometer, Orphanet J. Rare Dis. (2024); NORD.

What Kindravia is

One place where your whole story becomes insight.

Records, notes, photos, video, and DNA — brought together, made searchable by AI, and turned into answers you and the people like you can actually use. You own all of it, and you choose what's ever shared.

A glowing data core drawing together records, photos, and DNA, connecting families and researchers toward a doorway marked with a checkmark.
Four connected stages — contribute, understand, connect, discover — as glowing platforms linked by light.
How it works

Four ways Kindravia helps you move forward.

Now with AI that can reason across symptoms, genes, and the medical literature — and a resource search made for exhausted people reading at 2 a.m.

Create

Your health story, in one place

Build a private profile of symptoms, test results, and treatments — and securely pull in your own medical records, a right now protected by law.

Connect

Find people like you

Match with others by symptom, gene, or experience — even before a diagnosis has a name. You are rarely as alone as the odyssey makes you feel.

Explore

Search that actually understands

Ask in plain language and get trusted, sourced resources back — an AI research companion that helps you prepare for the next appointment.

Discover

A path toward research

On your terms, connect to matchmaking, studies, and clinical trials — turning shared experience into the discovery of answers.

Thousands of points of light in the dark, quietly connecting into glowing clusters of people matched by gene and symptom.
The heart of Kindravia

Ask a question. Get insight from people who've lived it.

Post what you're facing — a symptom that doesn't add up, a "variant of unknown significance," an inconclusive test, a dead end at the last appointment. Families who've been there, patients further down the road, and the researchers who follow these threads answer. No one should have to solve this alone.

You
"Has anyone seen episodic muscle weakness with elevated CK and a RYR1 variant of unknown significance? Our neurologist is stumped after 3 years."
Family · 14 following · 4 possible matches
A parent · been here "This looked exactly like our son at age 9. What helped was a muscle biopsy plus a repeat panel two years later — the VUS got reclassified. Ask about re-analysis."
Researcher · neuromuscular "RYR1 VUS reclassification is common as the science moves. I run a natural-history study and can point you to how to request a re-analysis."
"Undiagnosed for 6 years. For those who finally got answers — what actually moved the needle?"
Patient · 38 following · 21 answers
A member · diagnosed at year 7 "Whole-genome sequencing — not just an exome — and a one-page symptom timeline for every visit. The timeline is what got me to the right specialist."
A clinician · geneticist "Re-analyzing older sequencing data every 18–24 months finds new answers. Most people don't know to ask for it."
"Recruiting: families with unexplained developmental regression and a candidate gene. We're building the case for a new syndrome and need others."
Researcher · 9 following · seeking matches
A parent "This is us. How do we share our records safely?"
Advocate · rare-disease org "We can help connect eligible families — this is exactly how ultra-rare diagnoses get made."

Every thread turns one family's hard-won experience into the insight that shortens someone else's search. You always choose what you share, and with whom.

A translucent DNA strand whose rungs are formed from medical records, photos, and data flowing into it as light.
Why now

Three things changed that make this possible today.

This idea was ahead of its time. The technology and the rules have finally caught up.

Your records are yours now

Federal rules (the 21st Century Cures Act and modern health-data standards) give you the right to pull your own medical records into an app you choose. What used to be impossible is now the law.

AI can help connect the dots

New AI can reason across symptoms, genes, and millions of medical papers — and in studies now matches or beats specialists at surfacing rare-disease possibilities. We put that within reach of the people it's about.

Trust is non-negotiable

After high-profile failures in consumer genetics, people rightly ask, "what happens to my data?" We built Kindravia so the answer is simple: it stays yours.

A translucent vault holding a glowing DNA helix and personal records, wrapped in a ring of protective light, with a single key held outside.
Our data promise

Your data stays yours. Always.

Your health information falls under privacy laws stricter than HIPAA — and we go beyond even those. Here's exactly what we commit to.

  • You own your data and can take it with you or delete it at any time.
  • Nothing is shared for research without your clear, specific consent.
  • We never sell your data to advertisers. No ad tracking. Ever.
  • Your DNA can never be sold off as an asset — not even if we're acquired.
A set of glowing icons: a heart, linked figures, a microscope, a stethoscope, a megaphone, and a balance scale.
A hub where the whole community meets

Wherever you are in the search, there's a door for you.

Tap the one that fits. Kindravia meets each community where they are — and lets the silos co-exist in one place instead of pulling apart.

A DNA helix dissolving upward into a rising flock of small glowing human figures.

You are rarely as alone as the search makes you feel.

Every person who joins makes the next family's odyssey a little shorter.

Be first to know when Kindravia opens.

Join the waitlist. We'll only email you about early access — nothing else.

By joining you agree to be contacted about early access. Your email is never shared or sold.

Please note: Kindravia is a community and information resource. It does not provide medical advice, diagnosis, or treatment, and it is not a substitute for care from a qualified healthcare professional. Always talk to your doctor about your health. If this is a medical emergency, call your local emergency number.