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Fabry disease webinar series

By Jerry_at_NFDF · Posted August 12, 2010
Discussion in Treatments · 0 replies
If you participated in the 3-part Fabry disease webinar series last night, what did you think? Did anything in particular keep you from participating? Thanks, Jerry ...

Informational Website Launched for Pharmacological Chaperone Clinical Trial

By JGersh · New reply August 5, 2010
Journal · 1 reply
www.fabrystudy.com This informational website launched July 31st for the FACETS Study, an international Phase 3 clinical trial for AT1001, the oral pharmacological chaperone for Fabry disease ...

Fabrazyme shortage

By Jerry_at_NFDF · New reply April 24, 2010
Discussion in Treatments · 2 replies
How is the Fabrazyme shortage affecting you? Is anyone experiencing worsening symptoms? Thanks for sharing, Jerry ...

World Rare Disease Day

By Brian · New reply April 14, 2010
Journal · 27 replies
In recognition of Rare Disease Day 2010, Inspire and the National Organization for Rare Disorders conducted a survey of Inspire members with rare disorders. The results are enlightening, and I encourage ...

Health communities described in the New York Times

By Brian · New reply March 29, 2010
Journal · 21 replies
There is a good article, and mention of Inspire, in the New York Times. We spoke with the Pew Internet and American Life Project about this research, and support the work they're doing to understand the ...

FDA Enforcement Action with Genzyme

By Jerry_at_NFDF · Posted March 25, 2010
Discussion in Treatments · 0 replies
Please participate in the Genzyme Town Hall to hear about the recent FDA enforcement action: Genzyme Community Town Hall Wednesday, March 31, 2010 6:00 p.m.- 7:00 p.m. (EST) US Toll Free: # 888-469-0975 ...

Shire patient community conference call

By Jerry_at_NFDF · Posted March 3, 2010
Discussion in Treatments · 0 replies
Shire Human Genetic Therapies is hosting a Fabry Patient Community Summit Conference Call on Thurs, March 11 at 5-6:30 PM (EST). Call approx 15 minutes before the start time: U.S. number: 800.237.9752 ...

Genzyme Townhall on Feb 23rd

By Jerry_at_NFDF · New reply February 25, 2010
Discussion in Treatments · 2 replies
The next Fabrayzme supply audio-conference Town Hall is scheduled for Tuesday, February 23rd at 6:00 - 7:00 PM. The U.S. Toll Free phone number is: 800-779-5739. The U.S. Toll number is: 1-212-287-1826 ...

Is the Fabrazyme shortage affecting you and what are you doing to cope?

By Jerry_at_NFDF · New reply February 23, 2010
Discussion in Treatments · 2 replies
As the next Genzyme town hall on Tuesday approaches, we would like to know if the Fabrazyme shortage is affecting you and what you are doing to help cope with the situation. In the spirit of sharing concern ...

Inspire members featured

By Brian · New reply February 16, 2010
Journal · 33 replies
Today Massachusetts General Hospital's Proto Magazine published a wonderful profile of nine Inspire members. Each of these stories underscores what we all know to be true -- that Inspire is a special ...

Shire HGT Fabry Community Conference Call

By Jerry_at_NFDF · Posted February 9, 2010
Discussion in Treatments · 0 replies
Please participate in the Shire HGT conference call on: DATE: Thursday, March 11, 2010 TIME: 5:00 p.m. - 6:30 p.m. EST TOPIC: Fabry Patient Summit, Part 1 - This forum will provide an opportunity for ...

New NFDF Family Assistance Program

By Jerry_at_NFDF · Posted February 9, 2010
Discussion in Living with Fabry disease · 0 replies
The NFDF is offering free confidential counseling services to individuals with Fabry disease and family members through our new Family Assistance Program. For more info, sign up for our free e-newsletter ...

Community participation in Dermatology education

By Jerry_at_NFDF · Posted January 27, 2010
Discussion in Symptoms · 0 replies
Call to Action: Individuals with Fabry disease who have a good display of angiokeratoma are requested to participate in the NFDF's "Connecting the Dots Campaign". We can join together to provide education ...

Second NFDF e-newsletter

By Jerry_at_NFDF · Posted January 25, 2010
Discussion in Events and news · 0 replies
The NFDF will send our 2nd e-newsletter in the next couple of weeks. Sign up at www.TheNFDF.org in the "What's Hot" section (upper left) of the Home Page. We are providing some great new services and ...

Fabry Crisis

By BizzerG · New reply January 24, 2010
Discussion in Illnesses, hospitalizations, and losses in the Fabry community · 5 replies
My husband had a strange hospitalization last week. He does peritoneal dialysis, and takes treatment overnight. He woke up last week with intense stomach pain. He had to disconnect, and spent the next ...

stomach pain

By beckybilot · New reply January 19, 2010
Discussion in Symptoms · 4 replies
I have severe stomach pain that doesn't always let me eat. Sometimes I can have my favorite dinner in front of me and take one bite and my stomach just shuts down and I can't eat any more. Other times ...

In-line filters for infusions

By Jerry_at_NFDF · Posted November 24, 2009
Discussion in Treatments · 0 replies
My home-infusion agency, MedPro RX, sent an in-line filter for my infusion today and it worked great! In takes away any remaining concern for small particles that may occur in the manufacturing process ...

Fabry families going to Victory Junction

By Jerry_at_NFDF · New reply November 24, 2009
Discussion in Events and news · 1 reply
Fabry children and families are going to Victory Junction Gang Camp in Nov 2010. Watch the VJ video at http://espn.go.com/video/clip?id=4527308 Go to www.TheNFDF.org and sign up for the e-newsletter to ...

So much to accomplish and happy about it!

By Jerry_at_NFDF · Posted November 19, 2009
Journal · 0 replies
It feels great to get the first NFDF newsletter out the door. It means that we were also able to launch others programs such as our social networking campaign, Victory Junction, the Physician search tool ...

In-line filters to protect against particles in Fabrazyme

By Jerry_at_NFDF · Posted November 18, 2009
Discussion in Treatments · 0 replies
Regarding the particle contamination in Fabrazyme that is in the news, we as patients should know we can play a role in ensuring our safety. Ensure that your infusion center/infusion nurse is using an ...

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The National Fabry Disease Foundation Support Community connects individuals with Fabry disease, family members, friends and caregivers for support, inspiration and community building. The National Fabry Disease Foundation Support Community is sponsored by the National Fabry Disease Foundation in partnership with Inspire.