Forgotten Rare
Tool

Care Coordinator Hub

Your family's medical operating system. Reduce mental overload by keeping appointments, specialists, referrals, meds, symptoms, and follow-ups in one calm place.

Forgotten Rare provides educational and emotional support only. This platform does not provide medical, legal, financial, insurance, or emergency advice. Always consult your child's medical team, insurance provider, attorney, social worker, or appropriate professional before making decisions.

Not HIPAA compliant. Forgotten Rare is a personal support tool, not a medical records system. Please do not enter information you would not be comfortable storing outside of a HIPAA-protected environment. Avoid posting full identifiers (full name + date of birth + medical record numbers) and any data you are required to keep within a HIPAA-covered system.

Appointment Tracker

Date, provider, reason, questions to ask, follow-ups, reminders.

Open

Specialist Tracker

Doctor, specialty, portal, nurse contact, last and next visit.

Open

Referral Tracker

Status - requested, sent, scheduled, completed, denied - with reminders.

Open

Medication Tracker

Dosage, frequency, pharmacy, refill date, side effects, reminders.

Open

Symptom Tracker

Severity, triggers, what helped, exportable for the doctor.

Open

Surgery / Procedure Timeline

Pre-op checklist, recovery instructions, warning signs.

Open

Discharge Planning Checklist

Meds reviewed, follow-ups scheduled, supplies confirmed, warning signs understood.

Open

AI smart reminders

  • • "You have not followed up on this referral in 7 days."
  • • "This medication refill may be due soon."
  • • "You have an appointment tomorrow. Want help preparing questions?"
  • • "Insurance follow-up reminder due today."