Adrenal Crisis Advice

Adrenal Crisis Advice

In this time of transition with the Coronavirus or COVID-19 creating changes in our lives it is most important for all of those who have Primary Adrenal Insufficiency and Addison disease not to be fearful. There is absolutely no evidence from the World Health Organisation or Science that those with adrenal insufficiency are at an increased risk of contracting COVID-19. […]

A letter from Professor Alfried Kohlschuetter

A letter from Professor Alfried Kohlschuetter

I am very grateful for the magnificent work that Elisa Seeger, Jean Kelley, Janice Sherwood, Gina Cousineau and many others are continuing to do in getting New Born Screening (NBS) for ALD throughout the United States and the resultant success. The rest of the world is awake and working on their individual country’s requirements to achieve NBS. Professor Kohlschuetter and […]

To Be of Use – a Poem by Marge Piercy

To Be of Use – a Poem by Marge Piercy

To Be of Use by Marge Piercy The people I love the best Jump into work head first Without dallying in the shallows And swim off with sure strokes almost out of sight They seem to become natives of that element, The black sleek heads of seals Bouncing like half-submerged balls. I love people who harness themselves, an ox to […]

ALDConnect One Page Summaries

What is ALD? How is ALD inherited? Symptoms of ALD/AMN What Can I do to Stay Healthy? Current Treatments for ALD What is ALD? ALD stands for Adrenoleukodystrophy This combined word is made up from – Adreno – Leuko – Dystrophy Adreno refers to the Adrenal Glands which are found on the top of each of our kidneys Leuko is […]

ALD Life Information leaflets

These leaflets cover all aspects of living with the ALD gene and are generously provided here for your information courtesy of ALD Life: Practical Information for Males with Symptomatic ALD Practical Information for Males with Asymptomatic ALD Practical Information for Men with AMN Practical Information for Women with AMN Practical Information for Female Carriers of ALD

ALDConnect Patient Portal

Join the ALD Connect Patient Portal and be part of a global effort to fight ALD/AMN. Your information can help doctors and researchers to shape the direction of research and care. For perhaps the first time in the history of this disease, your experiences, your concerns, and your ideas will take centre stage. You know first hand about Adrenoleukodystrophy. No […]