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Adrenoleukodystrophy (ALD) Online Support Group

General Discussions


How to handle the news (15)
PICC Line Arm from Care + Wear (1)
Telemedicine Patient Education (1)
Do you shop online, especially at amazon? your usual purchases can help ben's friends at no cost to you! (1)
Sean Vitka & Blue Redefined Patient Organization Sponsors Ben's Friends (2)
Ben's Friend Partnership with PicnicHealth - Electronic Medical Records for Patients With Rare Diseases (1)
If You Could Choose 2 New Things For Your Support Group What Would They Be? (1)
Results from Ben's Friends Survey (1)
New Ben’s Friends Facebook Page for Caregivers (1)
Congratulations, Ben's Friends! (1)
Revised criteria for evaluating medical disorders (1)
Ben's Friends Member Survey (2)
Let's have a discussion about diet (1)
Is anyone participating in the Starbeam Study for gene therapy for CCALD? (1)
ALD Memorial Forum (1)
Ben’s Friends Patient Communities is now officially a 501(c3) non-profit approved by the IRS as of February 9, 2014! (1)
Nobody knows (4)
Newborn Screening in CA (2)
Tip of the Cap to Hank "Papa" McFadden (1)
Call out for volunteers to appear in a major TV documentary series (1)
Ben's Friends Jan 2014 Fundraising Update (1)
The Solution to Diagnostic Delay May Be Closer Than We Think (1)
Wonderful Wordpress & Stripe Developer - Naomi at Gravity Plus Who Made Our Fundraising Possible (1)
Book Reviews (2)
Downloadable Ben's Friends Flyer (1)
Wish to get in contact to other grandparents (3)
This Thanksgiving, I'm Thankful For (1)
Success Stories (4)
Bone marrow transplantation for X-ALD (8)
Generic drugs don't necessarily mean low prices (1)