Support for Those Living with Adrenal Insufficiency

Support Organizations

Adrenal Insufficiency United is happy to provide this list of other Organizations which may be of help to you! Please read the descriptions and visit their websites. If your organization would like to be listed please contact us. All we ask is for a reciprocal listing on your website. AIU is always looking for more ways to collaborate and work together to help both the Adrenal Insufficient Community and other communities affected by Rare/Chronic Disease or Conditions.


RareEmergency.Info is a collaborative website created to help members of rare disease community find out about emergency protocols and programs available in their states. The main focus is on Emergency Rooms/Departments and EMS Agencies. The group is also looking for solutions for students in K-12 schools.

 

CAH is US, CAH is a rare genetic disorder and the endocrine team at Great Ormond Street Hospital appreciate that patients and parents often feel alone in their journey in dealing with this complex disorder. To help and offer support as well as give both parents and older patients the chance to meet, exchange ideas and share experiences, our group CAH IS US was founded. Follow CAH is US on Facebook.

 

Canadian Addison Society  The number of people with Addison’s Disease (Adrenal Insufficiency) varies with surveys in different countries depending on how these surveys are done, but in the United States, between 6 and 11 out of every 100,000 people will be diagnosed with this disease. The statistics are probably the same in Canada.

With this low prevalence of the disease, you may not have met anyone else who has this problem and it can be supportive to discuss your experience with others who have a similar problem.

We hope to help educate not only the medical society but also the public to aspects of the disease.

 

ADL Life,    Adrenoleukodystrophy (ALD) is a rare, inherited metabolic disorder. In this disorder, the fatty covering (myelin sheath) of nerve fibers in the brain is lost, and the adrenal gland degenerates, usually leading to progressive neurological disability and death. A good portrayal of the effects of ALD on both the victim and family is the film Lorenzo’s Oil. It accurately describes the deterioration of a young boy with the disorder and resultant problems. The film does suggest that a cure (Lorenzo’s Oil) was found. Unfortunately, this is not the case for those already with symptoms, although the oil is now a recognised and hopefully preventative treatment for all boys under six with the gene who are not presenting symptoms. It is now also being tested as a preventative treatment for men with adrenomyeloneuropathy (AMN) and females with symptoms. Follow ADL Life Twitter.  Read about the link between ALD and AI.

 

EndocrineWeb has a long legacy as the leading website serving patients and doctors with focused coverage of endocrine disorders and more specifically Thyroid conditions. Link to their pages on Hyperthyroidism  Hypothyroidism Thyroid Cancer 

 

What is The EPIC Foundation: Empowering People with Invisible Chronic Illness (EPIC) Foundation is a 501C3 nonprofit organization that seeks to empower those living with chronic illness. EPIC offers support, advocacy, and tools for coping to those living with chronic illness and their loved ones and caregivers, with a particular focus on Cushing’s Syndrome and related illnesses. The EPIC Foundation is unique due to the nature of how it embraces the mind, body, and spirit rather than only focusing on the actual disease. The EPIC Foundation intends to address vital issues such as trauma and loss which affect the community. The foundation staff, which includes trained psychologists, provides various resources to support patients living with chronic illnesses and caregivers.


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.

 

RDLA,    Rare Disease Legislative Advocates (RDLA) is a collaborative organization designed to support the advocacy of all rare disease groups. Our goal is to empower the patient to become an advocate! By growing the patient advocacy community & working collectively we can amplify our many voices to ensure rare disease patients are heard in State & Federal Government.

 

Team Impact,  Team IMPACT matches children with college teams to create an opportunity for children to participate as a team member.  Basic eligibility requirements include that the child Is between the ages of 5-15 Has been diagnosed with a life-threatening or chronic illness that has resulted in treatment and/or extended hospital stays within the past 3 years. As a result of their diagnosis, could benefit from a boost to improve their quality of life both socially and psychologically.

 

harmony 4 hope,  Harmony 4 Hope is a not for profit 501c3 tax exempt corporation founded in 2014 for the purpose of using Music to uplift children, create community awareness for rare disease and contribute to Rare Disease Scientific Research.

 

Pituitary Network Association  To support, pursue, encourage, promote and where possible, fund research on pituitary disorders in a sustained and full-time effort to find a cure for these illnesses. The PNA will disseminate information helpful to the medical community, the public and to pituitary patients and their families on matters regarding early detection, symptoms, treatments and resources available to patients with pituitary disease. Watch our Public Service Announcement on YouTube

 

NORD  Every day in America, 30 million people wake up to fight the battle with a rare disease. The vast majority are children. For most, there are no cures and few, if any, proven and effective treatments.  NORD provides a unified voice for those courageous individuals, and the parents and other caregivers seeking to help them, so that they won’t have to fight that battle alone.

 

The Mighty   We publish real stories by real people facing real challenges. We are building a brand and a community around them. Having a disability or disease doesn’t have to be isolating. That’s why The Mighty exists.

 

 WEP Clinical is a clinical services company which sets up and manages Expanded Access Programs (EAPs) on behalf of sponsors. These programs, also known as Compassionate Use or Named Patient Programs, distribute potentially life-saving treatments to where there is an unmet medical need. Patients who have no viable treatment options available to them, who cannot receive an investigational drug through a clinical trial, or who live in a country where an approved drug is not commercially available, can potentially gain access to medication through one of these programs.

 

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.

Recent News and Events

  • What Constitutes an Emergency
    What Constitutes an Emergency
    October 12, 2017 by
    by Sarah Reilley   Read more from her blog @ Spoons and Adrenals As we all know, adrenal crisis is a life or death situation.  Without immediate, proper care, there’s a very small window to correct the crisis before coma, brain damage, and death occur.  Not every emergency...
    Read more
  • Conference on Adrenal Insufficiency
    Conference on Adrenal Insufficiency
    October 1, 2017 by
    Registration for AIU’s first ever conference devoted to adrenal insufficiency is now open! We are thrilled to open registration for our March 23-25 conference held in Kansas City, MO.      With an amazing line up of professionals addressing a wide range of topics this conference is not to...
    Read more

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