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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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Ben Munoz & Ben's Friends were featured in Forbes over the weekend! Thanks to the Members who talked to the author, Sarah McKinney.
"We're In This Together: Stories & Tips from Patients with Rare Diseases" can be found HERE.
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.
Ben Munoz and Ben's Friends Patient Communities were featured in Forbes over the weekend! Thanks to the Members who talked to the author, Sarah McKinney.…Continue
We’re so proud to announce the release of the Ben’s Friends iPhone App!!!
Go to the App Store and download it now. To help others locate the app easier and enjoy online support, don't forget to give the app a 5-star rate review. Strong reviews like 5-star help bumps up Ben's Friends in the Apple's search result.
In the App, you can access all 35 support communities through the site and it’s perfect for staying in touch with your friends, info and support while on the go. In our beta tests, patient reported using it in doctor office waiting rooms and right after they were given a new diagnosis. The next feature in the App will be portable doctor reviews!
Best of Ben's Friends is a collection of inspirational or informative posts from across our family of patient communities. To nominate a post, discussion, photo, or video, email the link to firstname.lastname@example.org.