We build the platforms that turn what families observe every day into data that holds up to a regulator, a payer or a sponsor.
The caregiver records what they see, in the app or on WhatsApp.
Every use of the data has its own versioned consent.
Nothing is deleted: every correction is recorded.
De-identified, coded extracts, exportable as FHIR.
For most of the 7,000+ rare diseases there is no natural-history baseline to compare against. Populations are small and scattered across the world. Outcome instruments rarely capture what a caregiver sees at home, day after day. And the durability of a one-time therapy has to be shown over years, in the gaps between clinic visits that happen twice a year.
The missing data does exist: it lives in notebooks, WhatsApp groups and the memory of families. What does not exist is the infrastructure that makes it structured, consented, traceable and interoperable. That is what we build.
Daily entry by the caregiver: sleep, mood, feeding, seizures, therapies, milestones. Designed so an exhausted family can do it in under a minute.
Separate, versioned consents, with re-consent and a record of every change. Consent is data, not a checkbox.
Append-only audit log: errors are corrected by adding, never by mutating history. Built to ALCOA+ principles.
k-anonymity, suppression of small groups, and a documented re-identification risk assessment.
Common data elements, ORPHA and HPO coding, FHIR R4 export and research-ready extracts. Data built to be joined with other people's data.
Agents that structure the caregiver's account and reduce the burden of recording. They never replace clinical judgement. AI prepares; a person decides.
PittHope is a non-profit initiative supporting families living with Pitt-Hopkins syndrome, an ultra-rare genetic condition in which most children do not speak. Their experience reaches research only through the person who cares for them. Balexus built and maintains the platform.
Platform figures as of 20 September 2026. The data belongs to the families and is governed by the non-profit; Balexus is the technology provider.
The most useful thing this project taught us: in Latin America one in three queries does not arrive through an app, it arrives on WhatsApp. If capture does not live where the family already lives, there is no data.
A platform with protocol, visit schedule, standardised instruments and research-ready export.
Consent architecture, traceability, de-identification and the technical framework for third-party data access.
A data model aligned to registry standards, FHIR export and documented extracts for research teams.
Sustained capture for years after treatment, in whatever country the family lives in, for therapies that must prove durability.
If you are designing the evidence strategy for a therapy in a rare condition, or you need a patient community to generate data a regulator will accept, we can build that layer.
Or write to us directly at [email protected]