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.

At AIU we love this community that we have built and we love each and every one of you that is a part of it!!
02/14/2026

At AIU we love this community that we have built and we love each and every one of you that is a part of it!!

One way to take part in Rare Disease Awareness Month, is to share your story.🦓 Remember how lost and scary things were p...
02/13/2026

One way to take part in Rare Disease Awareness Month, is to share your story.

🦓 Remember how lost and scary things were prior to diagnosis?

🦓 Remember the loneliness you felt when first diagnosed?

🦓 Remember the days before you found real life people who had similar experiences?

Sharing your story can help you, and can help others. There is something freeing and validating in sharing your story and having others respond that they too have been there, or having a politician say it is something that they did not know about, but now that they do they will not forget.

How do you share your story?
🦓 Our AIU FB support groups allow to connect with others. The best place to start is our large group, https://www.facebook.com/groups/AIU.AISupport , we have a group just for parents and caregivers here, https://www.facebook.com/groups/274273143001065 and one for spouses, family and friends of affected adults here, https://www.facebook.com/groups/222801411210713

🦓 Global Genes has resources to help you learn how to most effectively share your story to different people. Link is here, https://globalgenes.org/rare-disease-storytelling/

🦓 AIU has a place to share your story here, https://aiunited.org/share-your-story/

🦓 RareIs, part of Everylife Foundation, has a place to share here, https://www.rareiscommunity.com

🦓 And NORD has a place too, https://www.rarediseaseday.org/share-your-story/

🦓 Any of the organizations above also have opportunities for you to use your story to reach out to legislators and help advocate for change.

How will you tell your stroy this month?

Adrenal Insufficiency United it very excited to begin highlighting the speakers for our 2026 Summit on Adrenal Insuffici...
02/12/2026

Adrenal Insufficiency United it very excited to begin highlighting the speakers for our 2026 Summit on Adrenal Insufficiency, April 23-25. The conference will take place in person at the DoubleTree Hilton Minneapolis Airport and Mall of America, both in Bloomington, MN. We are also offering a virtual option - https://form.jotform.com/AIUnited/virtual-summit. For more information on agenda, speakers, sponsors and to register click here, https://aiunited.org/aiu_events/

The first speaker we are introducing is Dr. Irina Bancos:

Irina Bancos, MD, MSc Professor of Medicine Division of Endocrinology, Metabolism, Diabetes and Nutrition, Mayo Clinic Rochester, MN, USA Joint appointment Department of Laboratory Medicine and Pathology, Mayo Clinic, Rochester, MN, USA Dr Irina Bancos is Professor of Medicine and works in the Pituitary-Adrenal-Gonadal subdivision of Endocrinology division at Mayo Clinic, Rochester, USA.

She also holds a joint appointment with the Department of Laboratory Medicine at Mayo Clinic. Dr Bancos received her M.D. from the Iuliu Hatieganu Medical University in Cluj-Napoca, Romania. She has completed her Internal Medicine Residency at Danbury Hospital in CT, USA and Endocrinology Fellowship at Mayo Clinic, Rochester.

In addition, Dr Bancos completed a two-year research fellowship (Mayo Foundation Scholarship) at the University of Birmingham, UK where she received training in steroid profiling and adrenal disorders. In 2015 she returned to Mayo Clinic, where her clinical and research interests include adrenal and pituitary disorders, and mechanisms of steroid regulation of health and disease. Dr. Bancos has published more than 250 scientific articles.

She currently serves as Deputy Editor for the European Journal of Endocrinology. Dr. Bancos is passionate about translating research findings into actionable interventions for patients with adrenal disorders and mentoring the future generation of adrenal endocrinologists.

Rare 101:In the United States, where AIU is located, it is said that rare disease affects 1 out of 10 people. If the ave...
02/11/2026

Rare 101:

In the United States, where AIU is located, it is said that rare disease affects 1 out of 10 people. If the average household is 4 people, that means if it is not someone in your house that has a rare disease, look to the houses on each side of you, and it's likely one of them does. Of course, many are genetic and can run in families, and statistics do not line up so that it is every other house, but you get the idea.

So, while each rare disease may not affect a large population (some only affect 1 or 2 individuals), as a collected group it is actually quite common.

Our goal at AIU is to make each of you feel a little less alone each day by connecting with others with slmilar life experiences in the diagnostic journey and living with a rare condition.

Was this your guess?AIU hopes that here we also have a similar feel. We know that the journey to rare and living with ra...
02/10/2026

Was this your guess?

AIU hopes that here we also have a similar feel. We know that the journey to rare and living with rare can feel lonely. We hope that here at Adrenal Insufficiency United you find more than information, but you find connection and feel a little less alone.

More on this tagline and meaning behind it in Rare 101 tomorrow.

AIU will be closing this initial needs assessment at the end of the week. It now has been open for 4 months and has over...
02/10/2026

AIU will be closing this initial needs assessment at the end of the week. It now has been open for 4 months and has over 1000 respondents. So, here is one of your last chances to have your data included in these first steps of determining the next 15 years of Adrenal Insufficiency United.

Even with over 1000 responses, I want you to know that every sinlge one matters and is helping to draw a picture of our community. You have been heard, loud and clear.

Here is a snapshot of the results on the question, "What would you most like healthcare professionals to understand about adrenal insufficiency?"

Is there anything else you would add from the big picture? We will be drilling down on each of these in the future with the help of our Medical Advisory Board.

https://bit.ly/4n2ZI90

And trivia is back....All of these would fit, as good taglines, but only one is right!!Answer in a couple of hours. What...
02/10/2026

And trivia is back....

All of these would fit, as good taglines, but only one is right!!

Answer in a couple of hours. What is your guess?

Some times we all need a nice break....it is National Pizza Day and that sounds like a great reason for a break!!
02/09/2026

Some times we all need a nice break....it is National Pizza Day and that sounds like a great reason for a break!!

Many have had the frustration of trying to find a doctor that understands their condition.AIU is working, in 2026, with ...
02/09/2026

Many have had the frustration of trying to find a doctor that understands their condition.

AIU is working, in 2026, with our esteemed Medical Advisroy Board, to put together peer-reviewed, cited information to help providers understand the nuances and complexities of living with adrenal insufficiency.

We also have a map of providers that others like you have seen and recommended. Please check out the provider map here (please note the map is at the bottom of the page), https://aiunited.org/information-adrenal-insufficiency/

Also, because we know many here have more than one rare condition, and that can make it more difficult to find a provider that understands. NORD has worked to establish numerous Centers of Excellence on Rare Disease. See this link for more information, and to find one near you, https://rarediseases.org/rare-disease-centers-of-excellence/

Why the zebra? According to NORD's website, www.rarediseases.org: The zebra is the official mascot for rare disease pati...
02/08/2026

Why the zebra? According to NORD's website, www.rarediseases.org:

The zebra is the official mascot for rare disease patients. Historically, medical professionals were told that when they “hear hoofbeats,” they should not expect to see a zebra. In other words, look for the more common answer, a horse. Now, we know that one in ten Americans is actually a zebra! It might not be obvious when you look at us, which is why we show our stripes to raise awareness.

Wearing stripes can start a conversation that helps others learn about the prevalence and challenges of rare diseases.

One full week of Rare Disease Awareness Month. We hope you are learning something about rare, knowing that you are not a...
02/08/2026

One full week of Rare Disease Awareness Month. We hope you are learning something about rare, knowing that you are not alone and hopefully finding resources to help you along your journey if you need them.

Today we are continuing with our Rare Disease Trivia from NORD!!

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92178 LEWIS AND CLARK Road
Astoria, OR
97103

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