About ARIA

About ARIA

The mission: one place for the caregiver, research, and lab work rare-disease families already do.

About ARIA

The origin

ARIA began as software for families navigating STXBP1 epileptic encephalopathy — a rare genetic neurological condition. It was built by a family for families, working with researchers and clinicians from day one. The patterns that work for STXBP1 generalize to other rare neurogenetic conditions, and ARIA now supports 14 gene-specific foundations with the same infrastructure.

The mission

One place for the caregiver work, research work, and lab work that rare-disease families already do across a dozen apps.

The three lenses

  • Family Navigator — Today Board, Meal Planner, Phenotype Tracker, Reminders, My Devices, Foundation Hub, Chat, Accessibility.
  • Research Mode — Variant Explorer, 3D structure, ESMFold, Workflows, Deep Context, Phenopacket export, EEG Workspace, ClinVar + MAVS.
  • Self-Driving Lab — Wet-lab automation with unified shell, instrument tabs, protocols, campaigns, safety, and validation.

A shared data layer means a single Phenopacket can come from all three.

Principles

  • Local-first. Your data is on your machine.
  • Honesty rails on research claims. No pathogenicity claims. No diagnostic language on surfaces that aren't clinical.
  • ARIA never touches money. Commerce handoffs complete on the third-party service in your own account.
  • Accessibility is architecturally enforced. CVI mode, sensory profile, palm rejection, photosensitive-safe animations.
  • Sources are cited, not paraphrased. The medical RAG retrieves from peer-reviewed chunks; chat citations link back.

How to get involved

Why ARIA exists

Rare-disease families navigate medical, insurance, educational, and research systems that were not designed with them in mind. ARIA is built to a standard that researchers and partners can rely on, and delivered in a form caregivers can actually use.

Updated on: 
Apr 14, 2026