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If your family has been affected by Adrenoleukodystrophy (ALD), consider Adrenoleukodystrophy (ALD) Support Network your second home.
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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.
Thrilled to announce that Ben's Friends received a $1,500 donation from Sean Vitka and Blue Redefined (http://www.blueredefined.org/), a non profit patient organization. It's incredible to be recognized by…Continue
A few weeks ago, my friend Noga Leviner told me she was building an Electronic Medical Records system for people with rare conditions. It's called PicniceHealth (…Continue
This post was written by Lovett, a Moderator on Fibromyalgia Support. Lovett is one of the 200+ Volunteer Moderators on Ben's Friends Support Communities. Rather than just posting this on the Fibromyalgia site, I thought every community would…Continue
Hi everyone, you'll recall that a couple of months ago, we asked all the Members of Ben's Friends to fill out a short survey about how Ben's Friends helps you. The survey was put together by a prestigious non profit consulting group called …Continue
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Posted by Scott Orn on July 21, 2014