Support for Those Living with Adrenal Insufficiency

Awareness and Advocacy

We believe that increasing awareness about adrenal insufficiency is vital. It’s the first step in creating change. In our communities, it helps our friends and family understand the illness, encourages people who may have symptoms to seek testing, and educates emergency medical providers of the severity of an adrenal crisis.

Advocacy takes awareness a step further, by speaking up and asking for specific actions to be taken for the AI community. Advocacy uses our combined voices to be heard. It can take many forms. For example, letter writing, making phone calls, or getting petitions signed. Advocacy garners support for legislative change, such as standard protocols and better access to treatments.

There are many ways AIU can help you increase awareness and advocate for the AI community. We want to thank our supporters for making it possible to share these educational materials!

Awareness
  • Set up a table at a local picnic or community event. Print out a few brochures about adrenal insufficiency to jump start conversations.
  • Have a night with family and friends. Treat them to a take-out or delivery meal and some (light-hearted) information about AI.  Share our website and public Facebook pages with them.  Adrenal Insufficiency United on FB      Adrenal Insufficiency Coalition on FB
  • Visit your local EMS/Fire station. Introduce yourself with a basket of treats and then share information on how they can help in an adrenal crisis. Ask about local protocols to treat AI in an emergency. We have some helpful tips and downloads you can use to get you started.
  • Speak to interns/nurses/physicians at the local hospital. Many hospitals actively look for ways to help their staff stay current on new information. A 30-minute talk followed by a question and answer period is a great way to reach a group effectively. We are currently working on a presentation outline to help facilitate this type of speaking engagement. Please sign up for our email list to be informed when it’s available.

April is adrenal insufficiency awareness month.  Although increasing awareness is important throughout the year, April is a good time to team up with others and take advantage of new online awareness materials.

Rare Disease Day is the last day of February each year. There are over 60 conditions which can cause adrenal insufficiency.  AIU is pleased to partner with the rare disease community to further our mutual goals. The National Organization for Rare Disease (NORD) plans awareness activities in the U.S. NORD helps bring awareness to adrenal insufficiency and all its connected diseases. We encourage you to get involved!

Advocacy
  • Emergency 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, not only for those with adrenal insufficiency, but for all with rare disease. 

 

  • State and national legislation.

Oregon, Virginia, and Tennessee have all passed state legislation requiring school staff to be trained in the signs and symptoms of adrenal insufficiency. The legislation requires that some select staff be trained in the administration of Solu-Cortef®.

The state of Oregon also passed legislation requiring the Oregon Department of Health to disseminate information on adrenal insufficiency to EMS agencies. As a result, many Oregon Counties now have protocols to treat adrenal insufficiency.

In May 2017, Missouri became the first state to pass  legislation for the EMS system protecting those with special emergency needs.

To find out how you can help advocate, schedule an appointment with an AIU representative. Contact Us

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. (this page is currently being updated…check back soon)

 

  • School protocols

AIU has worked to enact legislation to ensure the safety of children in k-12 public schools. Oregon, Virginia, and Tennessee have all passed legislation requiring school staff to be trained in the signs and symptoms of adrenal insufficiency. The legislation also requires that some select staff be trained in the administration of Solu-Cortef®. Children with adrenal insufficiency must have a health plan in place.  School staff need training on the signs and 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 or her needs must be accommodated.  AIU has developed a school training PowerPoint and sample health plan. Look at our School Resources page for more information.

 


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.


 

 

 

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