Family Resources

The one thing that many of us have experienced is that feeling of loneliness when you have suddenly been given the news that you or a loved one has been diagnosed with a rare disorder. Unlike more established conditions, there isn’t an infrastructure of resources that you can immediately turn to that provides answers to all the questions you have at that moment or in the future.

This section won’t answer all of your questions, but as we’ve grown and developed as a foundation we’ve started to amass a collection of helpful tools and resources that may help to make the journey ahead a little easier.  

Julia Finch, Sherri Peltier, and Samantha Finch at our 2019 Symposium

Educating Loved Ones

The resources below will help you have those tough conversations with physicians or with family members about the day to day management of APS Type 1. You will also find some helpful brochures or materials to support your own education as you become a local expert on APS Type 1. If you find other resources along your journey please let us know!

Explaining the Condition

Visit the NORD APS Type 1 page

Watch the “What is APS Type 1?” Presentation from the 2019 Symposium

View the NIH Fact Sheet

View the NIH Yearly Laboratory Work-Up for APECED Patients

View Emergency Recommendations

Read About Adrenal Hormone Replacement Protocols

Informational Videos

Having a Family with APS Type 1

Going to College with APS Type 1

Solu-Cortef, Act-o-Vial safety syringe emergency injection

Mystery Diagnosis on the Discovery Health Channel features APS Type 1 – the patient story of Gaby Talarico.

Solu-Cortef Emergency Injection

Emergency Letter

We recommend creating a letter from your physician to help communicate how you or your loved one should be treated in case of an emergency. Here is one sample emergency letter.

Free Emergency Adrenal Insufficiency Card

Adrenal crises are scary and can be life-threatening. The European Society of Endocrinology has developed a wallet-sized card to instruct first responders in how to immediately treat patients presenting with adrenal insufficiency. These cards are available in English, Spanish and French. If you would like to receive an Emergency Adrenal Insufficiency Card, click the link below to email us. Please let us know how many cards you would like, your preferred language, and your postal address and we will mail it to you.

Request a Card

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