Sometimes you don't have the energy to explain Alström Syndrome to every stranger. These printable communication cards do it for you. Hand them over and let them read. They're small enough for wallet, large enough to be readable, designed for various situations.

Print, laminate if possible, customize with your specifics, and carry as needed.

Card 1 — General introduction (wallet card)

Front:

═══════════════════════════════════════════════════════════════
  HELLO. I HAVE A MEDICAL CONDITION CALLED
  ALSTRÖM SYNDROME.
═══════════════════════════════════════════════════════════════

  This is a rare genetic condition that affects:
  • My vision (cone-rod dystrophy)
  • My hearing (sensorineural hearing loss)
  • Sometimes my balance and other body systems

  I am not contagious. This is not your fault if I'm having
  difficulty.

  TO COMMUNICATE WITH ME BEST:
  • Speak clearly and at normal pace
  • Face me when speaking
  • Reduce background noise if possible
  • Be patient — I may need extra time

  Thank you for your patience.

═══════════════════════════════════════════════════════════════

Back (optional):

═══════════════════════════════════════════════════════════════
  EMERGENCY CONTACT:
  ____________________________________________________________
  Phone: _____________________________________________________

  PRIMARY PHYSICIAN:
  ____________________________________________________________
  Phone: _____________________________________________________

  Allergies: _________________________________________________

  Current medications:
  ____________________________________________________________

  IF I AM IN EMERGENCY, PLEASE CONTACT THE PERSON ABOVE.
═══════════════════════════════════════════════════════════════

Card 2 — At a restaurant

═══════════════════════════════════════════════════════════════
  HELLO,

  I have a medical condition (Alström Syndrome) that affects
  my vision and sometimes my hearing.

  TO HELP ME ENJOY MY MEAL:

  • Could you read me the menu, please? Or share it
    digitally so I can use my phone's screen reader.

  • I prefer a quieter table if possible — easier to hear.

  • I may need extra time to order.

  • [If diabetic] I have diabetes; could you tell me the
    carb content of dishes? Or which options are lower-carb?

  Thank you for your patience.

═══════════════════════════════════════════════════════════════

Card 3 — At an unfamiliar medical facility

═══════════════════════════════════════════════════════════════
  TO MEDICAL STAFF:

  My condition is ALSTRÖM SYNDROME (OMIM #203800).

  This is a rare multi-system genetic condition affecting
  approximately 1 in 1,000,000 people. Key features:

  • Cone-rod dystrophy with severe vision loss
  • Sensorineural hearing loss (I [do/don't] use hearing aids)
  • [History of cardiomyopathy / current cardiac involvement]
  • [Type 2 diabetes / no diabetes]
  • [Other relevant features]

  IMPORTANT FOR MY CARE:

  • Anesthesia: please consult cardiology before sedation
  • Medications: please verify against my current list
  • Communication: I [need / don't need] hearing
    accommodations

  My care team:
  Primary: ___________________________ Phone: _______________
  Cardiology: ________________________ Phone: _______________
  Endocrinology: _____________________ Phone: _______________

  I have an extended ER summary available — please ask if
  you need it.

═══════════════════════════════════════════════════════════════

Card 4 — At airline check-in / security

═══════════════════════════════════════════════════════════════
  TO AIRLINE / SECURITY STAFF:

  I have a medical condition affecting vision/hearing
  (Alström Syndrome).

  ITEMS I MAY BE TRAVELING WITH:

  • CPAP / BiPAP machine (medical equipment, exempt)
  • Insulin pump and CGM (DO NOT put through full-body
    scanner — please pat-down or hand-inspect)
  • Liquid insulin in cooling pack (exempt from 3-1-1 rule)
  • Hearing aids and accessories
  • White cane (folded)
  • Tinted lenses for photophobia

  I have a medical letter from my doctor confirming the
  necessity of these items.

  ASSISTANCE I MAY NEED:

  • Help with finding gate / counter
  • Pre-boarding
  • Verbal description of the boarding pass / boarding pass
    in accessible format

  Thank you.

═══════════════════════════════════════════════════════════════

Card 5 — At a hotel

═══════════════════════════════════════════════════════════════
  TO HOTEL STAFF:

  I have a medical condition (Alström Syndrome) and would
  appreciate the following accommodations:

  ☐ Refrigerator in room (for medications)

  ☐ ADA / accessible room

  ☐ Lower lighting / not directly under bright fixtures

  ☐ Help with finding the room and the building layout

  ☐ Verbal description of menus, room features

  ☐ Closer to elevator / accessible features

  ☐ Other: _____________________________________________

  I appreciate your help in making my stay comfortable.

  Room number: _________________________________________
  Contact phone: _______________________________________

═══════════════════════════════════════════════════════════════

Card 6 — At a workplace (for adults)

For adults with Alström who want a written summary to share with new colleagues or HR:

═══════════════════════════════════════════════════════════════
  WHAT YOU SHOULD KNOW

  I have a medical condition called Alström Syndrome that
  affects my vision and hearing. It is not contagious.

  HOW IT AFFECTS WORK:

  • I use [tinted lenses / sunglasses indoors] for light
    sensitivity. This is medical, not stylistic.

  • I [use hearing aids / cochlear implants / lip-read].

  • I use [screen reader / Braille display / specific
    accommodations] to do my job.

  HOW TO COMMUNICATE EFFECTIVELY:

  • Email is great for me — gives me time to use my screen
    reader.

  • In meetings, please face me when you speak and consider
    captioning.

  • Reduce background noise when we're talking when possible.

  • I'm happy to discuss specific situations with you.

  WHAT IS NORMAL FOR ME:

  • Bringing equipment to meetings
  • Asking for repetition occasionally
  • Asking for written follow-ups
  • Working differently from how others might

  WHAT I CAN DO:

  Most things you can. Just sometimes differently. I'm
  happy to discuss any specific concerns.

═══════════════════════════════════════════════════════════════

Card 7 — At an event / gathering (when introducing yourself)

For situations where you'd like to set expectations early:

═══════════════════════════════════════════════════════════════
  HELLO,

  I want to introduce myself and let you know:

  I have a condition called Alström Syndrome. It affects my
  vision and hearing.

  TO HAVE A GREAT CONVERSATION:

  • Tell me your name when we meet (faces are hard for me
    to recognize)

  • Speak from in front of me, not behind

  • If I miss something, just repeat it — I won't be
    embarrassed

  • If we're at a noisy event, we can step somewhere quieter
    if you'd like

  I'd love to hear about [your event / your work / your
  travels] — just need to be intentional about how we
  connect.

═══════════════════════════════════════════════════════════════

Card 8 — When you need help in public

═══════════════════════════════════════════════════════════════
  COULD YOU HELP ME?

  I have a vision impairment and am [trying to find / lost /
  confused about] something.

  COULD YOU HELP ME WITH:

  ☐ Finding ___________________________________________

  ☐ Reading the sign / menu / instruction

  ☐ Calling __________________________________________

  ☐ Getting to ________________________________________

  Thank you. Your help is greatly appreciated.

═══════════════════════════════════════════════════════════════

Card 9 — In transportation (rideshare, taxi, paratransit)

═══════════════════════════════════════════════════════════════
  TO MY DRIVER:

  I have a vision impairment and use a white cane.

  GOING TO: ____________________________________________

  ASSISTANCE I MAY NEED:

  • Help finding the vehicle
  • Verbal directions to my destination
  • Help with luggage
  • Letting me know when we arrive

  THANK YOU.

═══════════════════════════════════════════════════════════════

Card 10 — At a school event (for parents)

For parents bringing their child to school events:

═══════════════════════════════════════════════════════════════
  HELLO,

  Our child [Name] has Alström Syndrome — a rare condition
  affecting vision, hearing, and other body systems.

  WHAT TO KNOW DURING THIS EVENT:

  • [Name] has [vision issues / hearing issues / both]
  • [Name] has tinted lenses / hearing aids / cochlear
    implants
  • [Name] [does/doesn't] have specific medical equipment
    visible

  WHAT WOULD HELP:

  • Be patient — [Name] processes information differently
  • Speak clearly when interacting
  • Avoid bright direct lights
  • Include [Name] in activities — adapt as needed

  IF SOMETHING SEEMS WRONG: please come find me. I'll be
  watching, but I appreciate the heads-up.

  My phone: _____________________________________________

═══════════════════════════════════════════════════════════════

Card 11 — Translation card (international travel)

For traveling to non-English-speaking destinations. Have these translated to local language. Sample:

═══════════════════════════════════════════════════════════════
  TRANSLATION CARD — [DESTINATION LANGUAGE]

  English: I have a rare medical condition called Alström
  Syndrome.

  [Local language]: __________________________________________

  English: I am partially blind and have hearing impairment.

  [Local language]: __________________________________________

  English: I take important medications. I am not impaired
  by drugs.

  [Local language]: __________________________________________

  English: If I am unable to communicate, please contact
  this person:

  [Local language]: __________________________________________

  Name: _______________________________________________
  Phone: ______________________________________________
═══════════════════════════════════════════════════════════════

Card 12 — Emergency information card (alternative format)

A condensed version for fastest reference. Print on durable card:

═══════════════════════════════════════════════════════════════
  EMERGENCY MEDICAL INFORMATION

  PATIENT: ____________________________________________

  CONDITION: Alström Syndrome (rare genetic disorder)

  KEY FEATURES THIS PATIENT:
  ☐ Vision impaired   ☐ Hearing impaired
  ☐ History of cardiomyopathy ☐ Current cardiac care
  ☐ Type 2 diabetes — insulin user ☐ CPAP/BiPAP user

  MEDICATIONS — see attached / phone ID

  ALLERGIES: ___________________________________________

  EMERGENCY CONTACT 1: __________________________________
  EMERGENCY CONTACT 2: __________________________________
  PRIMARY PHYSICIAN: ____________________________________

  THIS PATIENT MAY NEED:
  • Adapted communication
  • Lighting reduction
  • Cardiac assessment for any sedation
  • Specific medication doses (verify before changing)

═══════════════════════════════════════════════════════════════

Tips for using communication cards

Print on quality paper

Use card stock or print on regular paper and laminate. Durability matters.

Customize each card

Fill in personal information specific to your or your child's situation.

Keep multiple

Keep cards in:

  • Wallet
  • Phone case
  • School bag
  • Travel bag
  • Car glove compartment
  • On the refrigerator

Use them confidently

Cards work because they communicate without you having to repeat the same explanation. Don't apologize for using them — they're a tool.

Update annually

As medical situation changes, update the cards.

Have backup digital versions

Photos of cards on your phone serve as backups.

Consider laminating

A laminated card lasts longer and looks more "official." Most office stores can laminate inexpensively.

Smart-phone alternatives

For digital options:

  • iPhone Medical ID — accessible from lock screen, accessed by emergency responders
  • Android Personal Safety / Medical Information — similar
  • Custom note in phone with key info
  • Photos of cards for quick sharing

For people with vision loss, screen-reader-accessible digital cards work in most situations.

Cards in other languages

For multilingual families or international travel:

  • Have the cards translated by a trusted translator (not just Google Translate)
  • Use medical terminology validated for the target language
  • Patient organizations sometimes have translated materials

Languages worth having:

  • Spanish (large global community)
  • French
  • Portuguese
  • Mandarin Chinese
  • Italian
  • German
  • Arabic
  • Hindi

Specific scenarios where cards help

Quick errands

The grocery store. A coffee shop. A short visit somewhere. Cards remove the energy cost of explaining.

Medical situations away from regular providers

Urgent care visits. Travel to other cities. New specialists.

When energy is limited

Some days you don't have the bandwidth to speak about your condition. Cards do it for you.

When others might be confused

Cards remove ambiguity — sometimes a person with a white cane and tinted lenses indoors is misread.

For children

Children too young to advocate for themselves benefit from cards their parents carry. School staff, doctors, and others can read what the parents need them to know.

Frequently Asked Questions

Do people actually read these cards?

Generally yes, especially when handed to them in a context that makes sense. Servers, hotel staff, transit operators, and security personnel are accustomed to medical communication cards.

What if I don't want to disclose my condition?

You don't have to. Cards are for situations where you choose to disclose for practical reasons. Many adults with Alström keep cards available without using them often.

Can my child have their own cards?

Yes. As children get older, they can have their own age-appropriate cards. The card grows with them — first describing them as a child of theirs, then describing themselves, then becoming an adult version.

What if a person's reaction is awkward or rude?

Some reactions are uncomfortable. Most people are kind. You don't owe explanations for the card. Walk away from genuinely unhelpful responses.

Related reading

These templates are for informational purposes. Adapt to your situation, language, and culture.