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About
What is Fabry?
Fabry disease is a fat storage disorder caused by a deficiency of an enzyme, alpha-galactosidase A (also called ceramidetrihexosidase), involved in the breakdown of fats. Since fat doesn't break down properly, part of it (globotriaosylceramide, also called Gb3 or GL-3) accumulates in the blood, blood vessels, and organs of the body and causes damage.
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Everyone please read, as we are having a problem with spammers
Started by Ben Munoz in General Discussion May 4. 0 Replies 0 Likes
All moderators and founders of Ben's Friends work very hard to keep spammers off the site, however their methods of applying for membership get more sophisticated each day. Just on this site, we must decline 25-50, maybe more, a day. There are…Continue
Fabry Patient Financial Assistance
Started by Tracy Z. in General Discussion Apr 29. 0 Replies 0 Likes
Hi Everyone,I contacted Patient Services Inc. for a Member from another Ben's Friends Forum. While reading over their website: …Continue
New film highlights families from around the world living with Fabry disease
Started by ExpandingFabryAwareness in General Discussion. Last reply by Scott Orn Apr 13. 1 Reply 1 Like
Plagued by a burning pain in his hands and feet since childhood, a German artist’s kidneys mysteriously begin to fail. He needed a kidney transplant to save his life. A Brazilian wife’s marriage is tested after her husband develops a mysterious…Continue
Tags: patient, advocacy, patients, empowerment, health
Ben's Friends was the blog topic for the tenth largest Pharmaceutical company in the world, Eli Lilly!
Started by Ben Munoz in General Discussion Apr 12. 0 Replies 0 Likes
The Power of Community for Rare Disease Patients…Continue
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Top Content
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New film highlights families from around the world living with Fabry diseasePosted by ExpandingFabryAwareness on April 12, 2013 |
| 2 |
Ben's Friends Co-Founder Scott Orn Featured on Thoughtbot PodcastAdded by Armando Abrero on April 22, 2013 |
| 3 |
Preparing For An Appointment With A New DoctorAdded by Ben Munoz on April 27, 2013 |
| 4 |
Everyone please read, as we are having a problem with spammersPosted by Ben Munoz on May 4, 2013 |
| 5 |
March 2013 Community NewsletterAdded by Ben Munoz on March 26, 2013 |
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Preparing For An Appointment With A New Doctor
Posted by Ben Munoz on April 27, 2013 at 7:42am 0 Comments 0 Likes
Finding a new doctor can be difficult, and very scary. Being prepared can make the whole experience much easier on you, and on the new doctor. Remember that the doctor works for YOU, and if you are…
ContinueApril 2013 Community Newsletter
Posted by Ben Munoz on April 26, 2013 at 11:18am 0 Comments 0 Likes
Dear LifeWithFabry Family and Friends,
Our prayers go to those affected by the Boston Marathon bombing. We also hope that none of our members were directly affected by it in any way.
Those who have listened to Scott’s …
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