Support for Those Living with Adrenal Insufficiency

Awareness and Advocacy

We believe that increasing awareness is vital.  It’s hard to advocate for something no one knows anything about.  Awareness can be increased in a number of ways.  Share your story, direct friends and family to our blogs, like our FB page and share it.

One fun and easy way to start raising awareness is to visit your local EMS/Fire Station. We have some helpful tips and downloads you can use to get you started. 
Join our AI Registry

We are excited to have found Patient Crossroads an organization willing to create a free registry for AIU. With a simple free account your voice can be added to those of other Adrenal Insufficient patients. Patients and researchers can access the data collected and learn the true statistics about AI. There are multiple surveys you can participate in, and the site makes it easy for patients by letting you stop anytime you like and return when you’re able. If you’re tired of not having a voice in the discussion of AI, register now and let your AI experience be added to the data!

Watch this short video to learn how the registry works.

Adrenal Insufficiency Awareness Month

April is adrenal insufficiency awareness month.  You can help in a number of ways.  Host your own awareness events, fund raisers, and social gatherings.  Tell your friends and family about adrenal insufficiency and share this website and connect to our social media platforms.  Visit to your local fire stations, schedule meetings with your ER directors, and your local and state government leaders.  Of course you may work on awareness all year long, you need not wait until April.

EMS/ER Protocols 

An adrenal crisis is a life threatening event requiring prompt and proper treatment.  AIU is working to ensure that everyone with adrenal insufficiency has access to the care they need.  Emergency Medical Personnel are not able to treat an adrenal crisis unless there are protocols which allow them to act.  AIU needs your help to get these protocols in place.  Contact us if you would like to help.

Julian

School Protocols

Children with adrenal insufficiency must have a health plan in place.  School staff need training on the signs/symptoms of adrenal crisis and how to give the injection.  Although many schools are happy to accommodate their AI students some are reluctant to train staff in the injection.  If your child is attending a public school in the USA his/her needs must be accommodated.  AIU has developed a school training powerpoint and sample health plan.  We are happy to work with your school district or state to help ensure children with AI receive the proper medical care while at school.

Look at our School Resources page for more information.

Take a look at our State Report Card pages to see what your state is doing for protocols in the emergency care and school settings.

 


Schedule a phone appointment to speak to an AIU representative about School or EMS/ER protocols. In your comments on the form let us know if you are interested in protocols for schools, EMS or other topics. We are unable to give any medical advice.

Are you going to an event where you’ll be talking and educating others about Adrenal Insufficiency?  Download materials here and feel free to contact us for further help.


This year Rare Disease Day is always the last day of February.

National Organization for Rare Disease (NORD) is planning several activities where you can be involved.  AIU promotes rare disease day because there are over 60+ conditions which can or do cause adrenal insufficiency.  Several of those conditions are rare so joining NORD not only helps bring awareness to adrenal insufficiency, but to rare disease in general.  We encourage you to participate and will help provide materials.

 


Would your business like to sponsor a page on our website?  Read our letter Business Sponsorship 2016 and/or sign up.


 

Thank you for sponsoring this page!

Galleries = 3 businesses and 3 individual supporters.

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Our thanks to Adrenal Insufficiency United for sponsoring this page.

We have a problem.

250,000 Americans are diagnosed with adrenal insufficiency. 6,000,000 more are considered to be adrenal insufficient yet remain undiagnosed.

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