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If your family has been affected by Fabry, consider Fabry Survivors your second home.

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Understanding Fabry Disease

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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.

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About

 

Ben's Friends Member Survey

Thank you for taking time to participate in our survey.  We are so grateful that more than 1000 of you responded! We are now working on analyzing the data. We'll let you know of the survey results soon.

Ben's Friends Now a Non-Profit 501(c)(3) Organization

This enables all donations to be tax deductible (starting with any made from July 2013), makes us eligible for corporate donations and matching gifts, and gives us access to grants and foundations (dramatically widening our donor pool), and provides benefits reserved for nonprofits (such as Google Ads credits).
This status will help us realize our ultimate goal - to ensure everyone affected by a rare disease has a safe place to go (our communities!) to connect with someone like them.
Thank you, Members and Moderators, for hanging in there with us and never wavering as we went through this difficult process. Now the real work can begin!
If anyone has any ties to grants, foundations, or partners who can help 501(c)(3) organizations, or if you have any past experience writing grant applications, please email us at partners@bensfriends.org

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.

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.

Fabry disease may be hard to detect because several of its signs and symptoms overlap those present in other diseases and conditions. Patients do not typically have all of the symptoms associated with Fabry, while others may develop them at different times throughout their lives.

It is important that the doctor finds out whether there is a family history of Fabry disease whenever it is suspected.

Forum

I might have Fabry disease - looking for info and support

Started by Tara in General Discussion. Last reply by Meridiansb Apr 7. 3 Replies

Hi everyone,I'm glad I found this forum. I'm a 24 year old from Canada and I live with another rare genetic condition called Ehlers-Danlos syndrome. I saw a geneticist several months ago who confirmed the EDS diagnosis, but, based on my personal and…Continue

Ben's Friends Member Survey

Started by Scott Orn in General Discussion Mar 21. 0 Replies

We are working with a non profit consulting firm called Bridgespan that helped us put this survey together to help us quantify the benefits of Ben's Friends. The hope is that we can use the data to make the communities better and to apply for grants…Continue

Ben's Friends Featured in Forbes!

Started by Armando Abrero in General Discussion Mar 4. 0 Replies

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

Tags: Fabry disease, rare disease

Waiting for results if i have Fabry

Started by helen in General Discussion. Last reply by dancermom Mar 2. 3 Replies

Hi I'm a 38 year old female I have been poorly for the last 7 years. I am just waiting for my results if I have Fabry disease. My symptoms are nerve damage in my hands and legs numbness and burning mainly in my feet, bloated stomach, hearing is fine…Continue

Latest Activity

Armando Abrero posted a blog post

Never give up.

Just wanted to share this inspiring video.Laugh often. Love a lot. Be strong. Never give up.…See More
17 hours ago

Moderator
dancermom left a comment for Mama Dog
"Yes, spring is my favorite season. I just returned from my first ever trip to Germany. It was newly…"
Tuesday
Mama Dog left a comment for dancermom
"69 years & trying to "go strong".  Springtime sure is wonderful. Little flowers…"
Tuesday

Moderator
dancermom left a comment for Mama Dog
"Have a happy birthday tomorrow, Mama Dog!"
Tuesday
Meridiansb and dancermom are now friends
Apr 14
Tara's discussion was featured

I might have Fabry disease - looking for info and support

Hi everyone,I'm glad I found this forum. I'm a 24 year old from Canada and I live with another rare…See More
Apr 13

Moderator
Ninibeth left a comment for Bob
"Welcome to the group!"
Apr 8
Scott Orn left a comment for Bob
"Giant welcome Bob! One tip, if you have specific questions it's best to start a New Discussion…"
Apr 8

Top Content 

1 March 2014 Community Newsletter

March 2014 Community Newsletter

Added by Ben Munoz on March 25, 2014

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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.

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Blog Posts

Never give up.

Posted by Armando Abrero on April 20, 2014 at 4:22am 0 Comments

Just wanted to share this inspiring video.

Laugh often. Love a lot. Be strong. Never give up.…

Continue

Fabry Disease Runs in This Yuma Family

Posted by Armando Abrero on April 2, 2014 at 9:01am 0 Comments

Just thought this story belongs here too. Check out this link!…

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