Adrenal Insufficiency United

supporting Organizations

There are numerous conditions which can lead to adrenal insufficiency and no one organization can be an expert in all of them.

At AIU we see our organization as an umbrella covering what we all have in common – Adrenal Insufficiency.

Groups we list here fit under the umbrella of adrenal insufficiency, many are dedicated to the specific conditions which cause it. 

Others are in support of all rare disease or chronic conditions.

ALD Connect is a consortium that brings together patients, families, advocacy organizations, physicians, scientists, and other stakeholders centered around adrenoleukodystrophy (ALD). We aim to improve health outcomes for patients with ALD by empowering patients, raising awareness, and accelerating the translation of scientific advances into better clinical care.

Danny's Dose is working to raise awareness to the current gap in Emergency Treatment for all with special medical needs, to change the current protocols, help educate emergency service personnel and educate affected families in proper emergency planning and protection.

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.

Mission: To provide information and support for Cushing’s Disease and Cushing’s Syndrome patients and their families To increase awareness in the medical community and the general public about Cushing’s Disease and Cushing’s Syndrome To be a resource for information and support to health care professionals

Global Genes provides hope for the more than 400 million people affected by rare disease around the globe. We fulfill our mission by helping patients find and build communities, gain access to information and resources, connect to researchers, clinicians, industry, government, and other stakeholders, share data and experiences, stand up, stand out, and become effective advocates on their own behalf.

​The National Adrenal Diseases Foundation informs, educates, and supports those with adrenal disease and their families to improve their quality of life. Our Goals: To stop death from undiagnosed Addison’s disease. To improve life quality of those who suffer from adrenal disease. To promote the study of adrenal disease to improve treatment and find cures.

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Harmony 4 Hope

Through music, H4H fuels external scientific discoveries in rare disease, educates future physicians, researchers and health care practitioners and unites community for rare disease. Music and storytelling make us a recognized leader in rare disease advocacy, education, and research.

Congenital Adrenal Hyperplasia

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. From this and his extensive research in cortisol in both adults and children he has gained in depth knowledge and we are grateful for his dedication and his work in all aspects of cortisol replacement. Over the years he has done hundreds of 24 hour profiles in a vast range of ages which has given him an immense insight in how to use glucocorticoids to replace cortisol.

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