National Fabry Disease Foundation Support Community

The National Fabry Disease Foundation Support Community connects individuals with Fabry disease, family members, friends and caregivers for support, inspiration and community building... More about this group

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Hot days!!

By chickenhawk1981 · Posted May 19, 2012
Discussion in Living with Fabry disease · 0 replies
I forgot how bad the heat was. Living with the pain is hard. But I don't know if I can do this. Not only have I had to quit my job now daily life seems impossible ...

cant take it anymore

By spectrum84 · New reply May 13, 2012
Discussion in Living with Fabry disease · 17 replies
I'm so fed up. I probably not the only one. I'm only 27 yet feel 97. My girlfriend of 6 years who I wanted to marry left because she couldnt deal with me. I lost my job. I moved back home. It seems like ...

The Inspire Q&A: Inspire talks with Howard Luks, MD

By John2 · New reply April 15, 2012
Journal · 59 replies
Dear Inspire Community Members, We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people we feel are making contributions to helping patients worldwide. We are posting ...

The Inspire Q&A--Inspire talks with Susan Grant

By John2 · New reply February 15, 2012
Journal · 31 replies
Dear readers, We at Inspire are pleased to bring you the latest in a series of interviews with people making contributions to helping patients and caregivers worldwide. We are posting these interviews ...

Inspire is hiring!

By Walter · New reply January 20, 2012
Journal · 15 replies
Inspire is hiring, and we're wondering if you know someone who would be the perfect addition to our team. Hello everyone, I'm Walter, one of Inspire's founders and the head of our technical team. I'm ...

New Fabry Inheritance Video

By Jerry_at_NFDF · Posted January 12, 2012
Discussion in Testing, diagnosis, and inheritance · 0 replies
The NFDF produced our second video in a series of many Fabry disease educational videos we hope to produce this year.This 6 minute video is designed to help families better understand the inheritance ...

The Inspire Q&A--Inspire talks with Michele Baldwin

By John2 · Posted January 3, 2012
Journal · 0 replies
Dear readers, We at Inspire are pleased to bring you the latest in a series of interviews with people making contributions to patients and caregivers worldwide. We are posting these interviews in a Q&A ...

Following: A new Inspire feature

By Walter · New reply December 5, 2011
Journal · 111 replies
Hello everyone, I'm writing to let you know about a new Inspire feature that we launched last night, designed to help you keep track of conversations you're interested in. We call it "following" and here's ...

Fabry symptoms video

By Jerry_at_NFDF · Posted December 1, 2011
Discussion in Symptoms · 0 replies
Please view this 15 minute Fabry symptoms video and share it with everyone you know and ask them to share it with everyone they know. Fabry disease remains a severely under-recognized disease. Thanks ...

Help to provide a R.A.R.E. opportunity for people with Fabry disease

By Jerry_at_NFDF · New reply November 26, 2011
Discussion in Symptoms · 1 reply
Please learn more about Fabry Disease and share this link with everyone to help Recognize And Rescue Everyone (R.A.R.E.) with this rare, progressive, destructive, life-threatening and treatable condition ...

November 2011 e-Newsletter

By Jerry_at_NFDF · New reply November 20, 2011
Discussion in Events and news · 1 reply
Hi everyone, Here is a copy of our November 2011 e-newsletter if you did not receive it directly. Please select the link below. You can sign up for the newsletter from the What's Hot section of our home ...

Prescription drug assistance

By Jerry_at_NFDF · New reply October 26, 2011
Discussion in Finding healthcare providers and insurance issues · 4 replies
I received a phone call from someone who needs some help. Is anyone is a situation where your insurance won't pay for a prescription medication? Someone is having trouble getting Provigil through their ...

Time to make a Difference?

By MommaP · New reply October 20, 2011
Discussion in Events and news · 1 reply
In lieu of the ongoing shortage of fabryzyme I belive that it is time that we gain a voice with the FDA. I see hundreds of drugs on TV with side effects so bad that they include symptoms of death. Meanwhile ...

Fabrazyme Shortage

By kimsg · New reply October 14, 2011
Discussion in Treatments · 11 replies
When is the FDA going to get off their rear ends and approve replegal for everyone. The continual shortage by Genzyme is getting old and should be addressed by the FDA in a better manner. Is there someone ...

Patient-driven research

By Brian · Posted October 13, 2011
Journal · 0 replies
I'd like to share with you a new Inspire report, The SCAD Ladies Stand Up: Stories of Patient Empowerment, which chronicles patient-initiated research in our community. This amazing patient-driven effort ...

The Inspire Rare Disease Day report

By Brian · New reply August 27, 2011
Journal · 19 replies
About a month ago, I asked Inspire members who have a rare disease or who are helping care for a loved one with a rare disease to share their stories for a special report. The stories you shared are wonderful ...

What works best for you?

By dblrd · New reply August 17, 2011
Discussion in Diet and exercise · 8 replies
Hi, friends. I'm curious about what others have found that works to help you feel better, function better. I guess this should be divided by who's on ERT and who's not because that makes a difference ...

Another bad week

By MommaP · New reply August 2, 2011
Journal · 1 reply
Well, my son went to work yesterday. And was out today. He spent all of last week in bed. Fever of 103, pain level of 12 on the scale of 1 to 10. So as you all know this meant no treatment because of ...

Discussion Group in NYC

By MommaP · New reply August 2, 2011
Discussion in Events and news · 1 reply
I have been in contact with someone who is having a discussion group in NYC the week of Aug 1st. Is anyone else aware of this ...

The Inspire Q&A: Inspire talks with Mithra Behnam Mojtahedi

By John2 · New reply July 30, 2011
Journal · 15 replies
Dear readers, We at Inspire are pleased to bring you the latest in a series of interviews with people we feel are making contributions to helping patients worldwide. We are posting these interviews in ...