Adrenoleukodystrophy (ALD) Online Support Group

About adrenoleukodystrophysupport.org


What is Adrenoleukodystrophy?

Adrenoleukodystrophy (ALD) is a rare, genetic disorder that leads to brain damage and failure of the adrenal glands. It affects the body’s nervous system, causing the weakening and failure of the nerve impulse; thus leading to disability.

Adrenoleukodystrophy (ALD) is a disorder of peroxisomal fatty acid beta oxidation which results in the accumulation of very-long chain fatty acids in tissues throughout the body. Clinically, ALD is a heterogenous disorder, presenting with several distinct phenotypes, and no clear pattern of genotype-phenotype correlation. As an X-linked disorder, ALD presents most commonly in males, however approximately 50% of heterozygote females show some symptoms later in life. Approximately one-third of ALD patients will present with the childhood cerebral form of the disease, which is the most severe form.

Who is adrenoleukodystrophysupport.org

is a dedicated patient-to-patient support community for families affected by ALD. Acutedisseminatedencephalomyelitis.org is powered by BensFriends.org, patient support communities for rare diseases, and is run by volunteer moderators who have been affected by ALD.

Who can join adrenoleukodystrophysupport.org?

If your family has been affected by ALD, consider acutedisseminatedencephalomyelitis.org your second home. adrenoleukodystrophysupport.org, like the rest of BensFriends.org’s patient communities, is free for members to join.

What is BensFriends.org?

In 2007, Ben Muñoz suffered a rare form of stroke caused by an AVM. He was unable to find the support he needed during the most difficult time, so he created an online support community AVMSurvivors.org to connect with others like him. AVMSurvivors.org led to the founding of BensFriends.org, driven to provide patient-to-patient support communities for people living with rare diseases or chronic illnesses.

BensFriends.org is a network of patient communities for people living with rare diseases or chronic illnesses. Launched in November 2007, BensFriends.org provides valuable patient support by creating and running compassionate, responsive communities. BensFriends.org maintains dozens of patient communities and has changed thousands of lives.

You can learn more about BensFriends.org at http://www.bensfriends.org or watch one of our videos at http://www.youtube.com/BensFriendsVideos.