Adrenal Insufficiency United

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Adrenal Insufficiency United

We are a group of concerned family members who are striving to bring everyone of any age or disorder

Anyone and everyone affected by Adrenal Insufficiency is welcome in this group. We will work to compile resources from all organizations working with those with Adrenal Insufficiency and make them available to all. Only by working together will we be able to make the policy changes needed to treat Adrenal Insufficiency properly in the field. Preventing further complications and death from Adrenal Crisis is our mission. Adrenal Insufficiency United is here to help educate and create awareness for Adrenal Insufficiency.....it's not a support page in the sense that we pose questions and talk back and forth like our support group. DISCLAIMER: Adrenal Insufficiency United is an organization of concerned family members, friends and affected adults. We are not a medical organization, and information contained in this website or on our pages is only intended to provide resources for those affected with Adrenal Insufficiency. No information on our website or pages is to be taken as medical advice. Please consult with your physician before making any changes to your medical regimes. Links to other websites, doctors, and resources are done as a service to those seeking additional information and support. We do not endorse or recommend any specific organizations or doctors and are simply listing then as resources for individuals to research on their own. AIU is not responsible for the content of other publications or websites reached from our links.

09/24/2026

This past week one of the larger rare disease organizations here in the United States changed their name and their branding. AIU knows that people with rare diseases, like many of those that cause adrenal insufficiency, use many resources for their information, support and advocacy. We want to be sure you don't miss anything from what was formerly Everylife Foundation. They are now, The Rare Foundation. You can checck out their website and what they offer here: https://www.rareadvocates.org

Other rare disease organizations that work at a higher level of rare disease are NORD, www.rarediseases.org and https://globalgenes.org

What other rare disease resources are out there that we are missing here? We are part of the International Adrenal Disease Consortium, so we are well connected in the adrenal space, looking for rare disease or health advocacy!

Let us know in the comments, we know that working with other organizations is a key component of being a nonprofit in our community!!

09/23/2026

In a FB group recently someone was asking about the causes of adrenal insufficiency. When I answered saying that there were over 50 different causes, it was met with disbelief.

AIU is an umbrella organization supporting anyone with any cause or form of adrenal insufficiency.

Here are two resources listing the causes of adrenal insufficiency. We are not suggesting that this is an exhaustive list. You may have a cause not on here. If so, we would love to hear.

We also know that there are many who do not know the cause of their adrenal insufficiency. For some, it comes to a point where knowing if it is primary vs. secondary is as far as the diagnostic journey goes. For some, it is very complicated and nuanced because of many factors affecting the person's health. We understand that it can be frustrating as a patient to not know the cause.

It is also widely believed that while many of the conditions that can cause adrenal insufficiency are rare, as a whole, it is not that rare.

Paper on the causes of primary adrenal insufficiency: https://pmc.ncbi.nlm.nih.gov/articles/PMC10667925/table/T1/?fbclid

Paper on the causes of central adrenal insufficiency (secondary and tertiary): https://www.ncbi.nlm.nih.gov/books/NBK279083/table/adren-insufficiency.T.etiology_of_centra/

09/21/2026

Last week Adrenal Insufficiency United shared that we have updated the Adrenal Crisis Treatment flyers on our website.

When we shared the link many had problems accessing it. We dug into it and found that with some links shared on this platform, the link will not copy as written but add in "Facebook".

So, the website is updated. The flyers are there and they do work in both English and Spanish. The QR codes are updated with links that will not expire. But we cannot link them here without some having issues. In order to access them, please go to our website whose url is aiunited. .org. It will not work to copy and paste, as I left spaces so that we do not have the same error happen again. Once on the website, please go to emergency preparedness and you will see the flyers.

We know this is frustrating, and it is for us as well.

Please know we make every effort to get this information to you in as easy of a format as possible. We want to make our website the central hub for all of our information and not have to rely on algorithms, and platform quirks. So, check our website regularly for updates.

Thank you for your patience in this. We appreciate you!!

09/17/2026

An exciting opportunity from our friends and partner, Danny's Dose!!

~Living with or supporting someone with a hashtag / hashtag ?
~Angry with care and access issues?
~Work in hashtag & see changes that need made?

Join us for a 4-Part Advocacy Education Series where you will learn proven information and insights to starting or strengthening your advocacy journey. {Registration is required - https://lnkd.in/gXxtJe7B

Session 1 - Wed, Sept 23 -- Finding Purpose in Your Journey
Session 2 - Wed, Oct 21 -- Building Your Foundation
Session 3 - Wed, Nov 18 -- Becoming an Effective Advocate
Session 4 - Wed, Dec 16 -- Advocacy Fundamentals

{Noon Eastern / 11 Central Time / 10 Mountain / 9 Pacific}
Each session is 30 minutes + 30 minutes for Q-n-A & brainstorming your personal issues.

**Provided by funding from EveryLife Foundation for Rare Diseases!**

09/14/2026

In 2026 AIU has been celebrating its 15th anniversary. We are proud of all that we have accomplished, lives we have touched and changes we have advocated for. But we know that there is still work to be done!

Join us in setting up AIU to ahcieve more in the next 15 years.

A monthly gift of $15, would help us continue to build more resources on emergency care, make and share more infomration for those new to the diagnosis, and continue to offer in-person and virtual events that bring our community together.

Every donation goes right back into our mission of, supporting individuals and
caregivers affected by adrenal insufficiency; empowering them with education, resources, community building, and legislative advocacy.

AIU 365, supporting people with affected by adrenal insufficiency every day, in every way!!

Click here to support this campaign, and share it with others, https://givebutter.com/aiu-365-iw5bvp

09/12/2026

Did you know that AIU has a store?

AIU Fall Sale is still happening with some of our emergency preparedness and awareness items going on here, https://aiunited.org/fall-sale/

We also have a pop-up store, where we will seasonally be changing items available here, https://aiunitedstore.org

These are ways that you get something and you support Adrenal Insufficiency United at the same time!

Please share!!

09/09/2026

Every now and then AIU is asked about how our community feels on something. In a world where it is often hard to get a majority to agree on anything, we did!!

We were asked about the importance in our community of an auto-injector for emergency hydrocortisone administration. The great majority agree that this would be life-changing!!

89% of affected adults said yes; 97% of parents said yes.

This was just a quick poll in our Facebook groups, but it is clear what an auto-injector would mean to our community. Let's get it done!!

Feel free to share with us in the comments how an auto-injector would change your life!!

09/03/2026

OK - Here is a fun one for today!!

Many with adrenal insufficiency crave salt and pickles and/pr pickle juice is a great source.

So what is your pickle name?

Share in the comments.

,

09/01/2026

From our friends at CSRF - Cushings Support and Research Foundation:

Things are changing in the medical community, and it's *almost* time to celebrate. Change requires the development of new understanding, and that's not an instantaneous thing. The hopeful take, as it relates to this change in OUR community, is that there are always new physicians who are seeking this information for the first time, and these hard-won changes will just be standard existing knowledge for them. It's very encouraging for the future, but it doesn't mean the need for self-advocacy is eradicated.

In the course of our work, we have many times been blown away by a speaker at a professional conference. When you hear a physician tell other physicians exactly what you wish they all already felt and knew about this diagnosis, it makes you wish cloning technology was more advanced. This year Dr. Elena Christofides (OH endocrinologist) was one of those speakers for us, and it's been a real treat to get to know her better as we have worked on the scope and outline for an upcoming webinar project about the patient-provider environment, sponsored by Recordati (makers of Isturisa).

We've met so many of you in person, over zoom, or even just on a phone call or email when you reached out for support. Our collective experiences are what we draw on when we give presentations like this, because, for now, so many of the same issues remain related to getting diagnosed, feeling prepared, feeling heard, and developing a strategy for the best possible care for a complex disease.

You are cordially invited to join us for a live webinar in a few weeks, offered on two separate dates so hopefully at least one works great for you. Check out the images for more information and register!

9/16 @ 7pm EST: https://tinyurl.com/CSRFwebinar1

9/17 @ 9pm EST: https://tinyurl.com/CSRFwebinar2

08/31/2026

We apologize for disappearing from your feeds for a couple of weeks, but we are back and ready to get to work!!

What is happening at AIU:

💙We are in the process of hiring our first employee!!

💙Continuing to create and disseminate information on necessary treatment of adrenal crisis and our Newly Diagnosed packet!

💙Planning our 2027 Lunch and Learns throughout the US!

💙 Securing funding and sponsors to make 2027 even more impactful than 2026!

💙Having board members attend conferences like EMS World, Acromegaly's Conference, and NORD's Summit to connect with others, share information about adrenal insufficiency, and continue to learn.

💙Working with pharmaceutical companies interested in taking the information gathered from this year's surveys and putting it to good use!

💙Starting a members-only portal to reach those who may not be on social media, but still need support from us!

💙Building out more resources on EMS guidelines for treatment of adrenal insufficiency/ adrenal crisis.

💙💙💙And so much more....

How to get involved? Reach out under the Get involved tab on our website, https://aiunited.org/get_involved/ (link to website in bio), email [email protected], or comment below.

We can't wait to get back to work!!

Address

Astoria, OR

Website

http://aiunited.org/

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