Adrenal Insufficiency United

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.

Every now and then AIU is asked about how are community feels on something. In a world where it is often hard to get a m...
09/09/2026

Every now and then AIU is asked about how are 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 shaer with us in the comments how an auto-injector would change your life!!

OK - Here is a fun one for today!!Many with adrenal insufficiency crave salt and pickles and/pr pickle juice is a great ...
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.

,

From our friends at CSRF - Cushings Support and Research Foundation:Things are changing in the medical community, and it...
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

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

đź’™We are in the process of hiring our first employee!!

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

đź’™Planning our 2027 Lunch and Learns throughout the US!

đź’™ Securing funding and sponsors to make 2027 even more impactful than 2026!

đź’™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.

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

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

đź’™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!!

This form is now available on our website. Thanks for your patience.Click on the link here to get it - https://aiunited....
08/10/2026

This form is now available on our website. Thanks for your patience.

Click on the link here to get it - https://aiunited.org/emergency-prep/

We are currently working on a Spanish version, Pediatric versions in English and Spanish, and then will start on surgical, hospital setting documents. Stay tuned here and on our website for more.

Adrenal Insufficiency United is working hard to build out our resources.There is a lot in the works, but it takes a long...
08/08/2026

Adrenal Insufficiency United is working hard to build out our resources.

There is a lot in the works, but it takes a long time to devlop high-quality, well vetted material with the complexiies of adrenal insufficiency.

We have a volunteer with a Master's in Public Health scouring sources to make sure that the information we include on anything is accurate. It is then passed through members of our Medical Advisroy Board for any changes or recommendations. Then the Board of AIU has the final approval before we share.

Often times people are frustrated that we do not share material from other organizations. It is because we have a rigorous standard that we adhere to before we share. We will not compromise this just to get things out.

We are working on more, watch for it here, and on our website, www.aiunited.org. If you have ideas on what you would like us to work on, please let us know here or through the contact link on the website!!

Together we are changing and saving lives!!

AIU is excited to share a podcast that Dr. Afreen Shariff was recently on.Dr. Shariff is an endocrinologist with Duke Un...
08/04/2026

AIU is excited to share a podcast that Dr. Afreen Shariff was recently on.

Dr. Shariff is an endocrinologist with Duke University focusing on endocrine disorders caused by immunotherapy. In this podcast, though she does discuss some things specific to oncology treatments, it is mostly general adrenal insufficiency information in an easy to understand way.

Dr. Shariff is also one of 6 doctors that AIU has on our Medical Advisory Board. This group oversees anything that we share on our website regarding adrenal insufficiency.

Please note that nothing said on this podcast (or really anywhere) should replace your doctor's instructions for you.

Listen here:

https://podcasts.apple.com/us/podcast/checkpoint-now/id1541046019?i=1000661457025

A note from Kerri Engebrecht, Director of AIU. I was on a call with a member yesterday. I love connecting with our membe...
07/30/2026

A note from Kerri Engebrecht, Director of AIU.

I was on a call with a member yesterday. I love connecting with our members!! This was a new member who had seen my Facebook live from a couple of weeks ago. On this, I several times have asked people to participate in our Hundredx Campaign that is behind our goal of $10,000.

This was someone who had been part of our community for maybe a week. She said given the work that we do and the value we give to our members that I just need to create a QR code and tell people eiher the do some surveys or donate.

So, here is our QR code to our donation page, and here is our ask - please take 5 minutes each of the next five days to do 5 surveys (spend at least 60 seconds on each survey), or please scan this code and donate $40 to AIU.

You see, we are a nonprofit, but as we often discuss at our board meetings (yes, we have regular board meetings with our dedicated board of directors!!) being a nonprofit does not mean we do not make money. Being a nonprofit means that what we earn must go back towards our mission.

What is our mission? Adrenal Insufficiency United (AIU) is dedicated to supporting individuals and caregivers affected by adrenal insufficiency; empowering them with
education, resources, community building, and legislative advocacy.

So, by giving to AIU you are giving back to the community that we are supporting through virtual and in-person support, education initiatives and advocacy.

That is the time and treasure piece, if you would prefer to give of your talents, click here to see our most recent newsletter and how you can get involved. https://aiunited.org/2026/07/17/new-aiu/

It takes a village, and we are so happy you are part of ours. Please join us in reaching more, helping more and ultimately changing and saving lives!!

***Please note on Instagram, our website link is in bio and all info is on there!!

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Astoria, OR

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