Support for Those Living with Adrenal Insufficiency

Support Groups

Adrenal Insufficiency United has connections to a plethora of Support Groups

Building a good support system can be one of the best ways to improve your quality of life. There are many ways to reach out, online and in your community.

 

Adrenal Insufficiency is treated with steroids.  Any supplements or special diets should be used under the supervision of a physician familiar with adrenal insufficiency.  The groups listed below are not appropriate for those forgoing steroid treatment for AI.  If you have a group you’d like to suggest we add please contact us

 Facebook Pages and Groups Run by AIU
Facebook Groups Run by individuals or other organizations:  The conditions below can or do cause adrenal insufficiency.
  • Adrenal Disease Support Group Offers information and support for those who are symptomatic, being tested for, or who are diagnosed with Addison’s disease or other forms of adrenal insufficiency.
  • Congenital Adrenal Hyperplasia   Congenital Adrenal Hyperplasia (CAH) is a family of inherited disorders affecting the adrenal glands.
  • Cushings Disease  A safe place for people to gather, share, care, empathize, encourage and commiserate about their journey with Cushing’s Disease.
  • Crainopharyngioma Group  A group of patients and survivors of a craniopharyngioma brain tumor. Offering support and encouragement to all ages and ethnicities.
  • To join a group for women with CAH contact alyssaleight@gmail.com
  • Parental Support for Adrenal Insufficient Children  This group is open to parents or guardians of children diagnosed with adrenal insufficiency.
  • Hypopituitary Support Group This group is to bring all of these people together into one place as a community, and share/support each other to the best of our abilities. All people are welcome to join our group, and learn about our condition. Family, friends and people interested in learning more or wanting to give support to their “Hypopit” loved ones are encouraged to join also.
  • Living with Addison’s Disease The LWA is an Adrenal Support Group for anyone that has or cares for someone with Adrenal Insufficiency. We support all Faiths & have a Weekly Event for Special Prayer Intentions. If you find this offensive, many other AI Support groups exist that may better suit your needs.
Face to Face Support Groups

For a list of organizations who support the AI, rare disease, and chronic illness communities, please see our support organizations page.

  • The NADF has several groups around the USA who have face:face support groups. Keep up with their calendar to see what’s going on in your area.
  • If you want to plan a get together in your area please contact us. NADF and AIU are happy to help you get started.
  • Opportunities to find new friends in your community. These suggestions are meant to jump start your imagination. In any size community, there are ways to connect with others. Even small interactions can help ease feelings of isolation. For example, a trip to the grocery store can become a social event by saying hello to other shoppers, the person ringing up your order, and the one carrying it to the car for you. Your friendly greeting may be just what they need.
    1. Senior Centers; these are often sponsored by local civic governments, and offer a variety of programs, such as gentle exercise, crafts, games, speakers, outings, etc. Many offer transportation services.
    2. Community Recreation Centers have regular events. During the summer activities in the park can be a good excuse to sit and people watch or make new friends.
    3. Libraries; many programs run during the day are attended by retired people or folks who are unable to work for a variety of reasons.
    4. Arts Organizations and Guilds; these can be a source for making new friends and developing new interests; many are happy to accept beginners as new members.
    5. Education Institutions; Universities and Colleges offer a variety of courses that can be attended in person or enjoyed online; some have discounted fees, or are offered free to seniors. Informal classes can be a great way for single people to meet others with the same interests.
    6. Faith-based groups; churches have social events, study groups, and other ways to connect through mutual beliefs.
    7. Doctors’ Offices often post notices and brochures advertising local health-based support.
    8. Some hospitals run support groups for various health issues.
    9. National Organizations such as AARP (U.S.) and CARP (Canadian) offer a variety of services and information with links to regional branches.
Websites

Contact us if you would like your organization’s website or a personal blog added. All we ask that you site Adrenal Insufficiency United as a resource on your website or blog as well.

  • CAH is US The aim of the group is to bring together families and people with congenital adrenal hyperplasia and other forms of adrenal insufficiency and provide information that will help generate better care and knowledge.All the information comes from state-of-the-art research. Professor Peter Hindmarsh who is the medical lead, was the first person in the world to devise a method which mimics the natural production of cortisol, the circadian rhythm, by devising a formula which slowly infuses cortisol at rates which are set to suit the individual’s unique handling of cortisol.
  • Canadian Addison’s Society  We hope to help educate not only the medical society but also the public to aspects of the disease.
  • Global Genes  Global Genes®  is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon®. What began as a grassroots movement in 2009 , with just a few rare disease parent advocates and foundations , has since grown to over 500 global organizations.
  • Pituitary Network Association  All things related to the pituitary gland.
  • National Organization of Rare Disorders  NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.  NORD, along with its more than 260 patient organization members,  is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
  • The Mighty  An online blog, video site where you can read and share personal stories about living life with a rare or chronic condition.
Blogs by those affected by Adrenal Insufficiency or other rare disease.
Special Needs Advocates and Parents Blog

Special Needs Advocates and Parents

Without a Crystal Ball Blog

Without a Crystal Ball

 

Clearly Alive: Living with Adrenal Insufficiency Blog

We have a problem.

250,000 Americans are diagnosed with adrenal insufficiency. 6,000,000 more are considered to be adrenal insufficient yet remain undiagnosed.

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