Alström Syndrome Care Binder Template (Free Download)

The single best organizational tool for Alström families. A 3-ring binder (digital or physical) divided into sections that hold every piece of medical information you'll need across years of care. This template tells you what goes where and includes printable forms for the most-used pages.

Why a care binder matters

Alström care involves 8–15 specialists, hundreds of test results, dozens of medications across years, insurance documents, school records, genetic test reports, and more. Without organization, important information gets lost and energy gets spent re-finding things instead of using them.

A care binder:

Centralizes everything important
Travels to every appointment
Becomes the reference for new specialists
Documents what's happened over time
Reduces the cognitive load of complex care
Is essential for hospitalizations and emergencies

Recommended structure (12 sections)

Section 1 — Quick Reference

At the front, for fastest access:

Current medical summary (1-page)
Current medication list with doses
Allergies
Emergency contacts
Specialist contact list
ER quick-reference card (see tools/er-quick-reference-card.md)

Section 2 — Personal & Identification

Birth certificate copy
Insurance cards (front + back) — copy
Passport / ID
Social Security Number (US)
Disability ID / Medicaid card
School IDs

Section 3 — Diagnosis & Genetics

Genetic test report (the single most important document)
Letter confirming diagnosis from your geneticist
Family pedigree (if drawn by genetic counselor)
Carrier testing results for parents
Sibling testing results (if applicable)
Genetic counseling notes

Section 4 — Care Team

Specialist contact sheet (template below)
Most recent letter from each specialist
Care coordination notes
Center of Excellence visit summaries

Section 5 — Surveillance & Test Results

Sub-divided by specialty:

Ophthalmology (ERG, OCT, fundus, visual acuity, fields)
Audiology (audiograms, OAE, ABR)
Cardiology (echo, EKG, cardiac MRI, Holter)
Endocrinology (HbA1c, glucose, insulin, lipids, hormones, thyroid)
Nephrology (creatinine, eGFR, urinalysis, microalbumin)
Hepatology (LFTs, abdominal ultrasound, FibroScan)
Pulmonology / sleep medicine (sleep studies, PFTs)
Other (urology, orthopedics, etc.)

Within each: most recent at top, oldest at bottom.

Section 6 — Imaging

Digital copies of all imaging on CDs/USB drives or in cloud
Imaging reports
Notes on which imaging was used at which visit

Section 7 — Medications

Current medication list (template below)
Medication history (changes over time)
Pharmacy contact info
Patient assistance program enrollment if applicable

Section 8 — Hospitalizations & Procedures

Discharge summaries
Operative reports
ICU notes
Procedure consent forms
Recovery notes

Section 9 — Insurance & Financial

Policy information
Denial letters and appeals
Pre-authorization documents
Bills and payment records
Patient assistance program documents
Disability benefits documents (SSDI/SSI applications)
ABLE account documents

Section 10 — Education

For school-age children:

IEP / EHCP documents (current and historical)
504 Plan
TVI evaluation reports
Audiology reports for school
Communications with school
IEP meeting notes
Vocational Rehabilitation documents (older students)

Section 11 — Daily Life Tools

Daily symptom/medication log (template below)
Glucose log (if diabetic)
Sleep log (if sleep apnea)
Exercise log
Mood/wellbeing log

Section 12 — Future Planning

Advance directives / healthcare proxy
Medical power of attorney
Will (for adults)
Letters of instruction
Funeral preferences (when ready to discuss)

Printable forms

Form 1 — One-Page Medical Summary

═══════════════════════════════════════════════════════════════
  MEDICAL SUMMARY — UPDATE EVERY 6 MONTHS
═══════════════════════════════════════════════════════════════

  Patient name: _________________________________________
  DOB: __________________  Age: _______
  Diagnosis: Alström Syndrome (OMIM #203800)
  ALMS1 variants: _____________ / _____________
  Date of diagnosis: _____________

  CURRENT FEATURES
  ☐ Cone-rod dystrophy: vision __________________________
  ☐ Sensorineural hearing loss: dB level _________________
       Hearing aids: yes / no    Cochlear implant: yes / no
  ☐ Cardiomyopathy history: _____________________________
       Current ejection fraction: ________%
  ☐ Type 2 diabetes: yes / no
       HbA1c: _________   Insulin TDD: ________ units
  ☐ Sleep apnea: yes / no    CPAP/BiPAP: yes / no
  ☐ CKD: yes / no    eGFR: ________
  ☐ NAFLD: yes / no
  ☐ Other: _______________________________________________

  ALLERGIES: _____________________________________________

  CURRENT MEDICATIONS (see medication list)

  PRIMARY CARE / PEDIATRICIAN: ___________________________
  Phone: __________________________________________________

  CENTER OF EXCELLENCE: ___________________________________
  Phone: __________________________________________________

  EMERGENCY CONTACTS:
  1. ______________________________________________________
  2. ______________________________________________________

  Last updated: _______________ by _______________________
═══════════════════════════════════════════════════════════════

Form 2 — Specialist Contact Sheet

═══════════════════════════════════════════════════════════════
  CARE TEAM CONTACT LIST
═══════════════════════════════════════════════════════════════

  Specialty            Provider Name         Phone     Last Visit
  ─────────────────────────────────────────────────────────────
  Pediatrician/PCP     __________________   ________   ________
  Clinical Genetics    __________________   ________   ________
  Cardiology           __________________   ________   ________
  Ophthalmology        __________________   ________   ________
  Audiology            __________________   ________   ________
  Endocrinology        __________________   ________   ________
  Nephrology           __________________   ________   ________
  Hepatology / GI      __________________   ________   ________
  Pulmonology / Sleep  __________________   ________   ________
  ENT                  __________________   ________   ________
  Urology              __________________   ________   ________
  Mental Health        __________________   ________   ________
  Dietitian            __________________   ________   ________
  PT / OT              __________________   ________   ________
  Pharmacy             __________________   ________   ________
  TVI                  __________________   ________   ________
  O&M Specialist       __________________   ________   ________
  SLP                  __________________   ________   ________
  Social Worker        __________________   ________   ________

  Center of Excellence: ___________________________________
  Phone: __________________________________________________

  Genetic Counselor: ______________________________________
  Phone: __________________________________________________

  After-hours nurse line: _________________________________
═══════════════════════════════════════════════════════════════

Form 3 — Medication List

═══════════════════════════════════════════════════════════════
  CURRENT MEDICATIONS — UPDATED ___________________
═══════════════════════════════════════════════════════════════

  Medication            Dose        Frequency       Prescriber
  ─────────────────────────────────────────────────────────────
  __________________   _________   _____________   ___________
  __________________   _________   _____________   ___________
  __________________   _________   _____________   ___________
  __________________   _________   _____________   ___________
  __________________   _________   _____________   ___________
  __________________   _________   _____________   ___________
  __________________   _________   _____________   ___________
  __________________   _________   _____________   ___________

  As-needed (PRN):
  __________________   _________   _____________   ___________
  __________________   _________   _____________   ___________

  OTC / supplements:
  __________________   _________   _____________
  __________________   _________   _____________

  ALLERGIES & REACTIONS:
  ─────────────────────────────────────────────────────────────
  __________________   ___________________________________
  __________________   ___________________________________

  Pharmacy: _______________________________________________
  Phone: __________________________________________________
═══════════════════════════════════════════════════════════════

Form 4 — Visit Summary Template

For after each specialist visit, document quickly:

═══════════════════════════════════════════════════════════════
  VISIT SUMMARY
═══════════════════════════════════════════════════════════════

  Date: ___________________   Specialty: _________________
  Provider: ________________________________________________

  REASON FOR VISIT:
  __________________________________________________________

  KEY FINDINGS / TEST RESULTS:
  __________________________________________________________
  __________________________________________________________
  __________________________________________________________

  CHANGES TO MEDICATIONS:
  __________________________________________________________

  PLAN / NEXT STEPS:
  __________________________________________________________
  __________________________________________________________

  NEXT APPOINTMENT: ________________________________________

  QUESTIONS / CONCERNS FOR FOLLOW-UP:
  __________________________________________________________

  Notes by: ________________________________________________
═══════════════════════════════════════════════════════════════

Form 5 — Daily Health Log

For daily tracking when active monitoring is needed:

═══════════════════════════════════════════════════════════════
  DAILY LOG — Week of: ____________________
═══════════════════════════════════════════════════════════════

           MON   TUE   WED   THU   FRI   SAT   SUN
  ─────────────────────────────────────────────────
  Weight   ___   ___   ___   ___   ___   ___   ___
  BP       ___   ___   ___   ___   ___   ___   ___
  Glucose
  morning  ___   ___   ___   ___   ___   ___   ___
  bedtime  ___   ___   ___   ___   ___   ___   ___
  Energy
  level    ___   ___   ___   ___   ___   ___   ___
  (1-10)
  Sleep
  hours    ___   ___   ___   ___   ___   ___   ___
  CPAP
  used     Y/N   Y/N   Y/N   Y/N   Y/N   Y/N   Y/N

  Symptoms / notes:
  Mon: ____________________________________________
  Tue: ____________________________________________
  Wed: ____________________________________________
  Thu: ____________________________________________
  Fri: ____________________________________________
  Sat: ____________________________________________
  Sun: ____________________________________________

  Medications taken as prescribed?  Y / N (if N, note below)
  __________________________________________________

  Things to mention to doctor at next visit:
  __________________________________________________
═══════════════════════════════════════════════════════════════

Digital alternatives

You don't have to use a physical binder. Digital options:

Cloud-based folder (Google Drive, Dropbox, OneDrive) with the same structure
Care-management apps (Carely, CareZone, MyChart aggregators)
Patient portal aggregators (CommonHealth, Apple Health Records)
Custom system — spreadsheet + linked documents

Most families use a combination: a physical binder for travel and emergencies, plus a digital backup.

Maintenance

After each visit

File the visit summary and any new test results
Update the medical summary if anything significant changed
Note questions for next visit

Monthly

Review for anything filed incorrectly
Update medication list if changes
Check that all reports were received

Annually

Comprehensive review and reorganization
Archive old materials (3+ years) to a secondary file
Update insurance documents
Refresh emergency contacts

Sharing the binder

Have a system for who has access:

Both parents (if applicable) — both should know what's in the binder and where
Backup family member — sibling, grandparent, close friend who could step in during emergency
The patient themselves as they grow up — gradual ownership transfer through teen years
Selected medical providers — the binder travels to important appointments

Frequently Asked Questions

How big should the binder be?

Start with a 2-inch 3-ring binder. Expand to 3-inch as documents accumulate. Many families end up with multiple binders organized by year.

What about HIPAA / privacy?

The binder contains your or your child's medical information. Keep it secure and only share with people who need access. Don't leave it accessible in public places.

Should we keep originals or copies?

Keep originals of important documents (genetic test report, IEP, etc.) and bring copies to appointments. Some families keep the originals at home and a "travel binder" for appointments.

How do we transition this to our adult child?

Start including them in the binder organization in the early teens. By late teens, they should know what's in it and how to use it. By early adulthood, they own it; you keep a backup.

Alström Syndrome Care Binder: Master Template