Search

Medical Information

These are sites that have useful information. We list them here solely to provide you with additional resources in understanding ALD. Medical advice about your specific situation should come from your specialist.

Information 

Learn.Genetics - The Genetics Science Learning Center – Sponsored by the University of Utah, this is an excellent online tutorial on genetics, inheritance, gene therapy and more. Well worth a visit.

Medline Plus Online Medical Dictionary

NINDS Adrenoleukodystrophy Information Page – Sponsored by the National Institute of Neurological Disorders and Stroke, this site contains accurate information about ALD.

Adrenoleukodystrophy on Medline Plus – Medline Plus is another good source of information. This site is sponsored by the National Institute of Health (NIH) and the USA National Library of Medicine.

Peroxisomal Disorders on e-Medicine – From Medscape, e-Medicine is a reliable source of information written by experts in the field.

Family Support

Australian Leukodystrophy Support Group – This group supports families affected by the wide spectrum of leukodystrophies.

United Leukodystrophy Foundation – This is an American support organisation for families with leukodystrophy. They have good basic information about the known leukodystrophies (34 known so far), newsletters for members, a "Second Opinion Program" and more. Well worth a visit.

The Stop ALD Foundation – An American organisation based out of Texas, this site contains current news items and information of interest to families.

The Myelin Project – An international organisation founded by Augusto and Michaela Odone, this organisation aims to increase awareness and research into demyelinating disorders. The Odones became well known for their tireless efforts to find a cure for their son Lorenzo who had adrenoleukodystrophy. This site explains the role of myelin, contains research progress reports, gives contact details for accessing 'Lorenzo's Oil' (click here for Nutricia (Australia)  adrenoleukodystrophy products) and much more. Worth a visit.