CareIntelligence

formedicallycomplexfamilies

For those who carry a lot

The love is yours. The rest is ours.

Arcolia turns what happened — voiced in the parking lot, typed at midnight — into a living medical record. Emergency Passport ready for any handover. Clinic Brief prepared before every appointment. So somewhere in all of it, you still get to be the person who loves them.

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Clinic Brief ready

Dr. Chen · Neurology

Mia K. · Neurology

Dr. Chen · Jul 15 – Oct 15, 2025 · 34 notes

Ready

12

events

~8d

avg interval

3d

since last

rescue used

Recent events

Oct 12, 2025

Absence cluster ×3 · Midazolam given · 3h post-ictal

Sep 30, 2025

Tonic-clonic, ~3 min · resolved without rescue

Sep 11, 2025

Absence cluster ×2 · resolved spontaneously

Aug 22, 2025

Tonic-clonic, ~4 min · resolved without rescue

Medication changes

Oct 8, 2025

Clobazam increased 5→10 mg/day. No sedation noted.

Aug 18, 2025

Stiripentol 250 mg twice daily started. GI tolerability good.

Questions flagged

  • Oct 12 cluster just 4 days post-clobazam increase — too early to assess efficacy?

  • Stiripentol at starting dose since Aug 18 — is the current regimen ready for review?

Prepared by the family · powered by Arcolia

Arcolia

Daily Dump

Voice

“Okay so — three absences back to back right at pickup. Cluster situation. Gave the Midazolam, she came through okay, but looked tired. No fever. She's just completely out of it now, canceled swim.”

Absence cluster ×3Rescue: MidazolamNo feverPost-ictal fatigue

Mia K.

DOB: 03/14/2018 · Age 7

Ready to share

Condition

Dravet Syndrome (generalized epilepsy)

Seizure rescue

Midazolam nasal · 0.2 mg/kg · prescribed 5 mg · call 911 if >5 min

⚠ Critical — Do Not Give

Carbamazepine · Phenytoin · Lamotrigine (worsens Dravet)

QR for ER

No login needed

You are not alone

If this sounds like your week…

You're already doing more than anyone should have to. The medical record-keeping isn't supposed to be your job too.

🧠

The specialist appointment

You told the neurologist something had shifted over the past two months. She asked for specifics. You had them — somewhere — but not organized, not ready to defend. She moved on. You spent the drive home replaying everything you should have said.

📨

The fragmented updates

Something happened at Tuesday's therapy session. By the end of the week you'd sent separate messages to the specialist, the pediatrician, and the OT — each one reconstructed from memory, each slightly different. You weren't sure any of them had gotten the same story.

🌙

The forgotten note

Something important happened today. You told yourself you'd write it down before bed. You were already too tired. You didn't.

🤝

The handover notes

You were leaving the kids with your mother-in-law for the first time in months. You wrote out the emergency instructions from scratch, worrying the whole time you'd left something out.

30M+

Americans living with a rare disease

Across 7,000+ conditions — most families managing their medical history with notebooks and email threads.

Source: NORD

53 hrs

per week — rare disease caregivers of children

Average hours spent on care each week. More than a full-time job, on top of everything else.

Source: National Alliance for Caregiving, 2018

6+ yrs

average diagnostic delay

Years of specialists, tests, and fragmented records — with no system to hold it together.

Source: Global Genes

Family stories

Whatever your loved one's condition, you're not alone in this.

Every family here carries something different. The condition, the routine, the protocol. But the weight of holding it all together — the appointments, the handovers, the explaining, the nights — that part doesn't change with the diagnosis.

🔒

Privacy first

HIPAA-conscious design. Your records are yours — never sold, never used for advertising, never shared without your permission.

Built for real moments

Every feature is designed to work when it counts — in an ER, before an 8AM appointment, during a handover to someone new.

🤝

From the community

Built by a caregiver who lives this. Shaped by families across rare disease, neuromuscular, GI, and metabolic conditions.

Designed for caregivers by caregivers

One calm system.

You describe what happened. Arcolia handles the rest — starting with the three moments that matter most to caregivers: the appointment, the emergency, the handover.

01

Daily Dump

“Sofia's CGM alarmed at 10:30 — she was 58 at school. Nurse gave her juice, came up to 94 in 15 min. Hit 280 by 1:30, called nurse to correct.”

AI extracted:

Low 58 mg/dLBG 280 post-lunch0.8u correction

Daily Dump

Say what happened. We handle the rest.

Voice or text — describe your day in plain language. No forms, no dropdowns. AI extracts medications, symptoms, timing, and events into structured records automatically.

  • Voice or text input
  • Automatic AI extraction
  • Searchable history
See how it works →
02

Alex M. · Age 7

Dravet Syndrome (SCN1A)

Offline-ready
Rescue (>5 min)Midazolam 4 mg intranasal
MaintenanceClobazam · Stiripentol

⚠ Never give

Phenytoin · Carbamazepine · Lamotrigine

Emergency Passport

One screen. Every handover.

A single offline-ready card with critical protocols, what to avoid, and emergency contacts. Works with zero Wi-Fi. No login required for the person reading it.

  • Works offline — no Wi-Fi needed
  • No login for first responders
  • QR code for instant sharing
See how it works →
03

Clinic Brief · Pulmonology

22 notes · Sep 8 – Oct 6

Ready

Key pattern

O2 sats 90–92% during all 3 PT sessions. Fully recovering within 20 min each time.

Surfaced question

“Cough assist settings (40/−40) — you wanted these reviewed at next visit.”

Clinic Brief

Walk in prepared. Every time.

One tap synthesizes your notes from any window — since the last visit, the last 30 days, or a custom range — into a clean, specialist-ready summary. No weekend prep required.

  • Customizable lookback window
  • Questions surfaced from your notes
  • One-tap PDF-ready output
See how it works →

More features in development — built around how caregivers actually live.

A note from the founder

My child was diagnosed with Dravet syndrome at 18 months old. In the years since, I've lived the parallel job that comes with a complex medical diagnosis — one no one hired me for and no one can take over.

I was spending entire weekends reconstructing timelines before appointments. I was walking into specialist offices underprepared, watching doctors make decisions with incomplete pictures — not because the information didn't exist, but because I couldn't hold it all at once. I knew my child better than anyone in that room. But I couldn't always prove it.

When I started showing up with organized records, something shifted. Doctors listened differently. Conversations moved faster. Questions I'd been carrying for months finally got answered — because I could point to a pattern, not just describe a feeling.

Arcolia exists because that shift shouldn't require a weekend of work. It should happen automatically, from the notes you're already keeping. The goal isn't just efficiency. It's the smaller emotional weight of knowing that when something happens — at 2am, at school, in a waiting room — your records are ready, your passport is current, and you don't have to rebuild everything from memory under pressure.

You deserve tools that understand your life. I hope this helps.

J

Founder, Arcolia

Dravet parent

Questions

Good questions deserve real answers.

Early access

You came as someone who loves them. Not as their case manager.

The summary is ready before you walk in. The questions are on your phone. The Emergency Passport is always there — offline, for anyone who needs it, even when you're not in the room.

Arcolia handles the logistics so you can be present. Join the waitlist and be among the first to walk into an appointment as yourself.

Whatever the diagnosis — the weight of holding it together is the same. So is the relief of not doing it alone.

No credit card required. We'll reach out personally when your spot is ready. HIPAA-conscious design. Not medical advice — for organizational use only.

Questions? support@arcolia.org