Annual surveys can't capture the year your families actually live.
Every platform asks your community to contribute data for research someday. CareGene helps them manage care today, and the richest data comes naturally from daily use.
Limited spots · Fully sponsored for qualifying foundations
The same patient. Two ways their story gets told.
The Coordination Crisis
Your families are exhausted. Here's why.
A new task list every day
Rare-disease caregivers track medications, appointments, therapies, school accommodations, and insurance appeals across spreadsheets and sticky notes.
Specialists who don't talk
Families see multiple specialists across multiple systems. Parents become the only thread connecting fragmented care.
Caregiver burnout is the rule
The community needs daily relief, not another annual survey. Tools built for the family unlock data the foundation can't get any other way.
The CareGene Difference
Other platforms collect old records. CareGene captures what's happening now.
Built for Record Review
Collect historical medical records. Value delivered periodically before appointments.
- Collect historical medical records
- Value delivered periodically (before appointments)
- Serve one user reviewing history
- Engagement drops after onboarding
- Data from annual surveys and clinic visits
- 15% typical registry engagement
Built for Daily Care Coordination
Capture daily living data in real-time. Value delivered every single day for the whole family.
- Capture daily living data in real-time
- Value delivered every single day
- Serve the whole family coordinating together
- Daily active use for care management
- Passive data from actual daily care
- 85% daily active engagement target
Daily use creates daily data. That's why CareGene generates richer longitudinal insights than any periodic survey.
What you get
Better data because it comes from daily life, not annual surveys.
Daily-use engagement
Families open CareGene because it helps them today, not because you asked them to contribute to research someday.
Longitudinal data
We designed CareGene to be used during everyday care, so the data reflects what families experience between appointments.
Faster trial matching
When trials open, instantly identify eligible families based on verified, up-to-date data, not stale records.
The Advocacy Advantage
Structured longitudinal data
When trials open, surface eligible families directly from the timeline they're already keeping for their own care.
Subject to study-specific validation. No questionnaires. No re-collection.
Longitudinal natural history
Continuous capture between appointments, structured into the standards your research team already uses.
Granular consent. Audit trails. Permission revocation any time.
Year-round engagement
A tool families use every day for their own care. Annual surveys and registries can't match that cadence.
Engagement comes from utility, not from asking.
Partner with us
We're selecting 3-5 foundations who want to give their families daily relief, and build the richest longitudinal dataset in rare disease.
What your families get:
- Free CareGene access for your entire community
- Multi-caregiver coordination tools
- Voice-first symptom logging
- Clinical briefs and prior auth support
- Pattern detection and AI insights
What your foundation gets:
- Custom Foundation Portal
- Real-time engagement metrics
- Research-ready data exports
- Priority trial matching integration
- Co-branded launch support
Pilots are fully sponsored. Your families pay nothing. Ever.
Built for families. Trusted by researchers.
Enterprise-grade security with a family-first philosophy.
Founded by rare disease parents
We built CareGene because we needed it for our own child. Your families' data is our family's data.
Families control their data
Opt-in research sharing only. Families see exactly what's shared and can revoke access anytime.
HIPAA compliant
Bank-grade encryption, SOC 2 compliant, BAA available for all foundation partners.
FHIR native
Data structured for research from day one. Export to any registry, EHR, or research platform.
Questions from foundations
Common questions from foundations and research partners.
How is CareGene different from Citizen Health or PicnicHealth?
What does it cost for our families?
How do families consent to research data sharing?
What kind of engagement can we expect?
Can we integrate with our existing registry?
Give your families relief. Get better data as a result.
Join the foundations building the future of rare disease care, and research.