Toolbox
Printable tools for the real work of Alström care.
Free practical templates for appointments, records, school planning, emergency handovers, daily tracking, travel, and family support. Use what fits now. Leave the rest for later.
25 tools
Templates, checklists, cards, and workbooks.
Print-friendly
Designed to save as PDF or bring to appointments.
Family-first
Plain language, practical, and medically cautious.
If you only do one thing today
Open the ER quick-reference card or appointment prep worksheets. Those two tools usually reduce the most stress fastest.
Most useful first
Start with these tools
Alström Syndrome Emergency Room (ER) Quick-Reference Card
A printable card for emergency rooms and first responders explaining what Alström Syndrome is and what your child or adult with Alström needs.
Open tool Care managementPersonalized Alström Syndrome Surveillance Schedule
Generate a customized surveillance schedule based on age and complications, drawn from the 2020 international consensus guidelines.
Open tool Care managementAlström Syndrome Care Binder: Master Template
A complete organizational template for managing Alström Syndrome care across many specialists, years, and life stages.
Open tool Care managementSpecialist Appointment Prep Worksheets for Alström Syndrome
Pre-visit worksheets for every Alström specialist — cardiology, ophthalmology, audiology, endocrinology, genetics, and more.
Open tool School & advocacyIEP / 504 / EHCP Accommodations: Sample Language for Alström
Copy-paste accommodation language for IEPs, 504 Plans, and EHCPs covering vision, hearing, diabetes, cardiac, and more — tailored for Alström Syndrome.
Open tool Emergency & referenceAfter-Hours Decision Tree: When to Wait, Call, or Go to ER
Decide quickly: handle at home, call the nurse line, urgent care, or ER? Decision tree for Alström families during off hours.
Open toolEmergency & reference
After-Hours Decision Tree: When to Wait, Call, or Go to ER
Decide quickly: handle at home, call the nurse line, urgent care, or ER? Decision tree for Alström families during off hours.
Communication Cards for Daily Situations
Printable communication cards explaining Alström Syndrome needs in restaurants, schools, workplaces, public spaces, and travel.
Could This Be Alström Syndrome? A Diagnostic Flowchart
A decision tree for parents and clinicians: when to suspect Alström Syndrome and what tests to ask for.
Alström Syndrome Emergency Room (ER) Quick-Reference Card
A printable card for emergency rooms and first responders explaining what Alström Syndrome is and what your child or adult with Alström needs.
Alström Syndrome Glossary: Plain-Language Definitions
Every medical term used in Alström Syndrome care, defined in plain language. Genetics, eye, ear, heart, metabolic, kidney, liver, and care team terms.
Care management
Personalized Alström Syndrome Surveillance Schedule
Generate a customized surveillance schedule based on age and complications, drawn from the 2020 international consensus guidelines.
Alström Syndrome Care Binder: Master Template
A complete organizational template for managing Alström Syndrome care across many specialists, years, and life stages.
30-Day Newly-Diagnosed Roadmap for Alström Families
A day-by-day, week-by-week action plan for the first 30 days after an Alström Syndrome diagnosis. Calm, practical, paced.
Specialist Appointment Prep Worksheets for Alström Syndrome
Pre-visit worksheets for every Alström specialist — cardiology, ophthalmology, audiology, endocrinology, genetics, and more.
Daily Tracker for Alström Syndrome (Symptoms, Meds, Glucose)
A printable daily tracker for symptoms, medications, glucose, sleep, and more — designed for the daily complexity of Alström care.
Annual Alström Syndrome Review Checklist
A yearly comprehensive review checklist covering all Alström body systems, surveillance, and life domains. Use it once a year.
First Hospital Stay Survival Guide for Alström Families
What to bring, what to expect, and how to advocate during your first hospital stay with Alström Syndrome — for both planned and emergency admissions.
CPAP / BiPAP Setup and Troubleshooting for Alström Families
Practical guide to CPAP and BiPAP for Alström families — daily setup, mask fit, troubleshooting, and accessibility for visually-impaired users.
School & advocacy
IEP / 504 / EHCP Accommodations: Sample Language for Alström
Copy-paste accommodation language for IEPs, 504 Plans, and EHCPs covering vision, hearing, diabetes, cardiac, and more — tailored for Alström Syndrome.
Letter Templates Pack: Medical Necessity, Insurance, School, Work
Ready-to-use letter templates for medical necessity, insurance appeals, school accommodations, and workplace requests for Alström Syndrome.
Genetic Counseling Pre-Visit Worksheet
Family pedigree builder, questions, and prep checklist for getting the most from your Alström genetic counseling appointment.
Mental health & life stage
Mental Health Safety Plan for Alström Syndrome
A personalized safety plan template for individuals and families managing mental health alongside Alström Syndrome. Crisis prevention and response.
Transition to Adult Care Workbook for Alström Syndrome
A multi-year workbook for teens and parents preparing the transition from pediatric to adult care in Alström Syndrome.
Caregiver Self-Care Plan for Alström Families
Practical self-care planning for parents and partners caring for someone with Alström Syndrome. Sustainable, not heroic.
Bereavement Resource Pack for Alström Families
Practical and emotional support for families experiencing the loss of a loved one with Alström Syndrome. Resources, rituals, and recognition.
Grief and Adjustment Journal Prompts for Alström Families
Journal prompts for parents, partners, siblings, and individuals processing the emotional weight of Alström Syndrome diagnosis and life.
Family & travel
Pregnancy Planning Workbook for Alström Syndrome
Pre-conception, pregnancy, and postpartum planning for women with Alström Syndrome — high-risk multidisciplinary preparation.
Sibling Story Book Template: Explaining Alström to Brothers and Sisters
An adaptable picture-book template for explaining Alström Syndrome to a sibling, with text and illustration prompts for ages 3-10.
Babysitter / Respite Care Information Packet
A printable information packet for babysitters, respite caregivers, family members, or backup care for a child or adult with Alström Syndrome.
Travel Medical Kit Checklist for Alström Syndrome
What to pack for travel with Alström Syndrome — medications, equipment, documentation, accessibility tools.
Use the toolbox without getting buried
- 1. Pick the tool that matches the next real task, not every possible future task.
- 2. Fill only the parts that matter today. Blank sections are allowed.
- 3. Save a copy as PDF and print the version you need for appointments, school, travel, or emergency care.
Quick wins
- Print one emergency card and keep it with medications or care documents.
- Choose one appointment worksheet before the next specialist visit.
- Start the care binder with only the medical summary and contact list.
- Use the annual checklist to spot gaps before they become urgent.
These tools help families prepare, organise, and ask clearer questions. They do not replace medical advice.