At AIU, we promote change for the AI community by addressing issues on many levels.
Awareness of adrenal insufficiency is a vital tool for improving patient care. 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. On a national level, it garners support for legislative change, such as better access to treatments and standard protocols.
Public awareness happens when we work together. We’ve created educational materials for events, fund raising, schools, patients, medical professionals, and emergency personnel. There are many ways you can help. By sharing your story, speaking at an event, or visiting the local emergency department, you can make a difference for the AI community. Learn more about awareness opportunities here.
Adrenal insufficiency changes the lives of those who are affected, and their loved ones. It can be hidden in our society because many either try to carry on through the challenges, or end up homebound and unseen. A good support system improves quality of life. AIU provides patient and family support through our Facebook support groups and public pages. We understand from experience what our members are going through. A full list of support groups and organizations can be found here.
AIU began with the belief that by working together we can change the world. It is part of our foundation and essential to our mission. Although most of the conditions causing AI are considered rare, collaboration between individuals and organizations creates a collective voice loud enough to be heard. By sharing information, we develop new tools to improve daily life. Partnerships combine the best of both organizations to achieve mutual goals. And supporters and sponsors make it all possible.
Our March 2018 conference in Kansas City Missouri was an example of what we can do together. Approximately 300 people gathered under one roof to learn, share, and connect with others affected by adrenal insufficiency. Read the details of the conference including speaker bios here.
Education and training
Our educational materials have been developed for a variety of needs. From our web site patients can learn about AI, a mom can find resources to communicate with her child’s school, or an emergency technician can watch a training video about AI. Our shop has brochures and other tools to help patients in an emergency. We also recognize and appreciate the AI organizations around the world who work hard to produce educational materials. If we don’t have something to address a need, one of these organizations will, and we are happy to help you locate them. Our Facebook AIC public page can help you locate resources and documents here.
Advocacy for protocols and legislation
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.
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. Find more information here.
State and National legislation
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®.
Oregon has 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.
CONSIDER JOINING A COMMITTEE. We welcome your help! Read more here.