WELCOME

Welcome! You're not alone.

If your family has been affected by Adrenoleukodystrophy (ALD), consider Adrenoleukodystrophy (ALD) Support Network your second home.

NOW....GET STARTED:

1. Become a Member
2. Make Friends
3. Post to a Forum
4. Read or write a Blog
5. Join or Create a Group
6. Follow us on Twitter
7. Become a fan to our Facebook

Got some QUESTIONS? 
Check our FAQ PAGE.

Read More from our  First-Time-User Guide.

Birthdays

Birthdays Today

Birthdays Tomorrow

Need a Doctor or Specialist?

Disclaimer

All of the material provided on this site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings and any other material submitted on this site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health never disregard professional medical advice or delay in seeking it because of something you have read on this site.

Please Be Kind & Use Appropriate Language

Let's Keep it Nice & Clean
1. No Spam
2. No Personal attacks
3. No Offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos)
4. No Profanity, sexual references and illegal activity subject matter in the Chat Room.   
5. No specific doctor or hospital name mentioned in a negative context, for legal reasons.    
Specific doctor or hospital names in a positive context are welcome.
6. No sharing of members' posts to other sites without their express permission.
7. There are many sites for discussing religion and politics. This is not one of them. Divisive posts about religion and politics will be deleted.
Thanks for your cooperation.
 

Community Moderators

Videos

  • Add Videos
  • View All

Gift Store

 

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.

Forum

How is everyone?

Started by dancermom in General Discussions. Last reply by dancermom 23 hours ago. 8 Replies

It's been awhile since we have heard from some of you. Now is a good time to check in, say hello to our newer members, and tell us how you are and what is on your minds. I hope to hear from you soon.Continue

Too good to be true?

Started by dancermom in General Discussions yesterday. 0 Replies

On the Internet, sometimes something can look like a medical breakthrough, but may not be as it appears. For instance, if you read this article written by a biotech startup company, you might think that a cure for ALD is right around the corner.…Continue

A little help from ALDLife

Started by dancermom in General Discussions Nov 15. 0 Replies

I am posting this information from the ALDLife website in case it may be beneficial for some of you, particularly the financial assistance program:07 November 2014 – Financial support. It is essential for some families suffering from ALD and AMN, as…Continue

Mobile App and E-Book Available for Download!

Keep in touch with friends. Get support and information while on the go. DOWNLOAD the Ben's Friends iPhone App now!

Learn how others cope and be inspired by the helpful tips and amazing stories of patients with rare diseases. Get the e-book "We're in This Together: Stories & Tips from Patients with Rare Diseases" HERE.

Latest Activity


Moderator
dancermom replied to dancermom's discussion How is everyone?
"If you post a discussion requesting information, I can send a message about it to all of our…"
23 hours ago
karthikeyan replied to dancermom's discussion How is everyone?
"Fine, I wont share again Kindly share regarding ALD, in my Home town - there is no info or medical…"
23 hours ago

Moderator
dancermom's 3 discussions were featured
23 hours ago

Moderator
dancermom posted discussions
23 hours ago

Top Content 

1 How is everyone?

How is everyone?

Posted by dancermom on November 21, 2014

2 FYI: SCT trial in Boston, UCLA, and MN is still recruiting

FYI: SCT trial in Boston, UCLA, and MN is still recruiting

Posted by dancermom on November 22, 2014

3 Too good to be true?

Too good to be true?

Posted by dancermom on November 21, 2014

 
 
 

Help Us Help Others

Help Ben's Friends

Like & Follow Us!

Follow Me on Pinterest

Give Us A Review

Bens Friends

Join the Ben's Friends list

Are You in Crisis?

First take a deep breath, then call the National Suicide Prevention Hotline immediately.  1-800-273-TALK for members in the United States.

For international members, please visit http://www.suicide.org/international-suicide-hotlines.html for information on where to call.

To Support ALDSupport.org, Click an Ad. Or Two.

"To Know the Joy of Giving"

Photos

Loading…
  • Add Photos
  • View All

Blog Posts

Ben's Friends Monthly Newsletter - October 2014 Issue

Posted by Ben on October 25, 2014 at 9:25am 0 Comments

Just the Stats:

Communities: 38

Friends: 43,500+

Connecting to others in a similar circumstance is helpful to decrease depression, anxiety,…

Continue

Events

Partners

BensFriends.org is proud to partner with a number of organizations to help our members in various areas, including legal, financial, research and medical. 

Know more about our PARTNERSvisit this link.

© 2014   Created by Bensfriends.org

Badges  |  Report an Issue  |  Terms of Service