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Adrenoleukodystrophy (ALD) Online Support Group

General Discussions


Topic Replies Activity
How to handle the news 15 September 22, 2014
PICC Line Arm from Care + Wear 1 September 4, 2014
Telemedicine Patient Education 1 August 31, 2014
Do you shop online, especially at amazon? your usual purchases can help ben's friends at no cost to you! 1 August 25, 2014
Sean Vitka & Blue Redefined Patient Organization Sponsors Ben's Friends 2 July 23, 2014
Ben's Friend Partnership with PicnicHealth - Electronic Medical Records for Patients With Rare Diseases 1 July 5, 2014
If You Could Choose 2 New Things For Your Support Group What Would They Be? 1 June 27, 2014
Results from Ben's Friends Survey 1 June 22, 2014
New Ben’s Friends Facebook Page for Caregivers 1 June 5, 2014
Congratulations, Ben's Friends! 1 May 4, 2014
Revised criteria for evaluating medical disorders 1 April 30, 2014
Ben's Friends Member Survey 2 March 23, 2014
Let's have a discussion about diet 1 March 4, 2014
Is anyone participating in the Starbeam Study for gene therapy for CCALD? 1 March 3, 2014
ALD Memorial Forum 1 March 1, 2014
Ben’s Friends Patient Communities is now officially a 501(c3) non-profit approved by the IRS as of February 9, 2014! 1 February 25, 2014
Nobody knows 4 February 20, 2014
Newborn Screening in CA 2 February 18, 2014
Tip of the Cap to Hank "Papa" McFadden 1 February 4, 2014
Call out for volunteers to appear in a major TV documentary series 1 February 2, 2014
Ben's Friends Jan 2014 Fundraising Update 1 January 22, 2014
The Solution to Diagnostic Delay May Be Closer Than We Think 1 January 7, 2014
Wonderful Wordpress & Stripe Developer - Naomi at Gravity Plus Who Made Our Fundraising Possible 1 January 7, 2014
Book Reviews 2 December 20, 2013
Downloadable Ben's Friends Flyer 1 December 9, 2013
Wish to get in contact to other grandparents 3 December 9, 2013
This Thanksgiving, I'm Thankful For 1 November 28, 2013
Success Stories 4 November 20, 2013
Bone marrow transplantation for X-ALD 8 November 15, 2013
Generic drugs don't necessarily mean low prices 1 November 8, 2013