Dear LRRO Donators, I have been missing some mail through Australia Post. Would that kind person who rung to tell me that their donation cheque has not been presented, please ring/email me again as the replacement one is also missing. My street and city address changed over a year ago as did my landline. However, all else is the same. […]
We are thrilled to share with you the completed newborn screening for adrenoleukodystrophy: an advocacy tool kit. This tool kit has been developed as an empowering and educational resource created in collaboration with bluebirdbio, to raise awareness of ALD and the potentially life-saving opportunity newborn screening can provide. Tool kit content include: The importance of NBS for ALD What is […]
Join Elisabeth Kübler-Ross Foundation on one of the latest events to learn about how to care for those who dying and grieving.
What is Leukodystrophy? Leukodystrophy or the Leukodystrophies is a group of inherited genetic conditions that are characterised by the imperfect development, growth of maintenance of myelin or commonly known as white matter. Historically, leukodystrophy diagnoses process was slow and poor and effective treatment only available for early stages of certain types of leukodystrophy. However, over the years as technology advanced, […]
What is Adult Refsum Disease? • Adult Refsum disease is a genetic disorder that prevents the body from breaking down and removing phytanic acid found in some of the foods that we eat. • The highest concentration of phytanic acid is found in dairy products, beef, lamb and some fish. • In Refsum patients phytanic acid accumulates in our nerve, […]
Four story, four different view of pain. The only thing that they have in common is no one can share the journey that they go through.
Have you ever sat in a public place and heard people talking about a recent experience with their doctor? They are often complaining about a recent visit to their local GP that has not solved their problem. Sometimes you hear comments that just do not ring true. They may have had a change of doctor. Most keep on seeing the […]
To state the blatantly obvious the vast majority of us are living in a time that has never been experienced before. Not since World War 2 have we been called upon to self discipline and live with our own company and have little social reaction. Rarely in living history has it been applicable to all countries of the world in and for a unified cause.
A list of Frequently Asked Questions for families regarding the current COVID-19 crisis and managing ALD.
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. […]