We didn't start a company. We built what we desperately needed.
CareGene began at home, in the early mornings and late nights between specialist visits. It became a company because every other rare disease family we met was drowning in the same way we were, stitching together fragmented tools that made coordinating care far harder, and far slower, than it should ever be.
Basanta & Anita at SXSW
Built for someone we love. Then for every family carrying this.
We built CareGene because we needed it.
In 2024, a loved one in our family was diagnosed with a rare condition. We went looking for answers and found a hard truth: there was no guide for what came next, and nothing that held the whole story in one place.
The months that followed were a blur of specialist visits, medication and nutrition tracking, clinical findings, and research. That history was spread across two phones, files and spreadsheets, journal and notes apps, MyChart, voice memos recorded at 2 AM that we never listened to again, and a folder of clinical papers we rarely had time to open. Each held a piece. None carried the story forward to the next visit.
At every appointment, we were the ones carrying the records. We had thirty minutes to recall everything that mattered, and that was all the clinician had to work with.
We needed one place where the full story lived: where a midnight seizure log, a Tuesday neurology visit, and a Friday lab result belonged to the same timeline, alongside a video of blowing out birthday candles. We needed the next clinician to walk in already knowing the history, rather than asking us to begin again.
So we built it for ourselves.
For the first three months, ours was the only family using CareGene, and the two of us were the only ones building it. When the first families outside our own tried the beta, they told us plainly what was not working. They were right about most of it. If you were one of those families, most of what CareGene is today came from you.
Today there are nine of us. The two of us who started it still lead product and engineering. Two of our nephews and a niece are on the team. Four others joined with no prior connection to rare disease, and they now ask how our loved one slept.
Along the way, we found the same problem in family after family, and we came to see that it was bigger than organization. Most of what a person with a rare condition goes through in a day is never written down, and the research that might help them one day needs exactly those details. We are not going to cure anything on our own. But what a caregiver writes down exists nowhere else, and if enough families keep those records and share them only when they choose to, it can help more than one family. That is why CareGene exists.
CareGene brings everything from a daily care task to a clinical visit into one timeline that you control and can share with your care team.
Your records belong to you. They are shared only when you choose, and never sold.
We are still early in this journey, but we know what to build next, because we live it every day.
