National Fabry Disease Foundation Support Community - Inspire

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

All new and active discussions & journals

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 ...

Fabrazyme manufacturing Town Hall

By Jerry_at_NFDF · Posted November 21, 2009
Discussion in Treatments · 0 replies
The next Genzyme Town Hall meeting is November 23rd at 6:00 PM (Eastern). See the NFDF website for details. The subject of this meeting is Fabrazyme and other drug manufacturing ...

Fabrazyme Shortage

By Jerry_at_NFDF · New reply November 20, 2009
Discussion in Treatments · 6 replies
Tonight, there is a second Town Hall with Genzyme, the NFDF, FSIG, and the Fabry community about the shortage of Fabrazyme for treatment of Fabry disease. To participate, please call in on Wednesday ...

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 ...

NFDF e-newsletter and more

By Jerry_at_NFDF · Posted November 18, 2009
Discussion in Events and news · 0 replies
After a few delays, we finally published our first e-newsletter. It took some extra time because the newsletter announces several new initiatives that we had to finish some details on before launch. If ...

hello

By kellyjoe · New reply November 13, 2009
Journal · 10 replies
hello new to site kellyjoe ...

NFDF e-newsletter

By Jerry_at_NFDF · Posted November 10, 2009
Discussion in Events and news · 0 replies
We delayed the 1st e-newsletter a few more days to complete our subscriber confirmation process. If you received an email, please confirm your subscription using the confirm link in the email. Otherwise ...

Inspire members featured

By Brian · New reply November 4, 2009
Journal · 29 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 ...

Spreading the word in the Fabry disease community

By Jerry_at_NFDF · Posted October 30, 2009
Discussion in General discussion · 0 replies
We have gotten off to a slow start with advertising new NFDF social networking opportunities. Our first newsletter should finally be distributed Monday. The newsletter describes our Inspire support community ...

Early access to Replagal for Fabry disease

By Jerry_at_NFDF · Posted October 21, 2009
Discussion in Treatments · 0 replies
The FDA has approved early access to Replagal ®, a second treatment for Fabry disease, as Shire prepares to apply for FDA approval to provide commercial treatment in the U.S. This measure offers U.S ...

Fabry Disease on FOX TV's House

By Jerry_at_NFDF · Posted October 6, 2009
Discussion in Events and news · 0 replies
What do you think of the Fabry Disease episode of House? Watch the episode of House on FOX TV at http://www.fox.com/fod/play.php?sh=house ...

Fabry Disease Family Weekend Camp

By Jerry_at_NFDF · Posted October 3, 2009
Journal · 0 replies
The NFDF and Victory Junction staff continued discussions this week about our Fabry Disease Family Weekend Camp at Victory Junction Gang Camp in November 2010. Early detailed planning will ensure our ...

NFDF e-Newsletter

By Jerry_at_NFDF · Posted October 2, 2009
Journal · 0 replies
The 1st edition of the NFDF "Fabry Focus" e-Newsletter is finished. We are compiling our email list to send it about Oct 15th. People can sign-up at www.TheNFDF.org from the What's Hot section of the ...

Fabry Focus e-Newsletter

By Jerry_at_NFDF · Posted October 1, 2009
Discussion in General discussion · 0 replies
The NFDF will send its 1st "Fabry Focus" e-Newsletter to the Fabry disease community about Oct 15th, 2009. To sign up for the e-Newsletter go to www.TheNFDF.org in the Home Page What's Hot section & complete ...

Fabry Focus e-Newsletter

By Jerry_at_NFDF · Posted September 29, 2009
Discussion in Events and news · 0 replies
The NFDF is building an email list to send our 1st e-Newsletter. Sign up in the What's Hot area of www.TheNFDF.org. Please add info@TheNFDF.org and natlfabrydiseasefoundation@app.topica.co m to your safe-senders ...

Here we go!

By Jerry_at_NFDF · New reply September 17, 2009
Journal · 1 reply
We just opened the National Fabry Disease Foundation's (NFDF's) social networking site. Now it is time to spread the word. We'd better get busy ...

Welcome to the NFDF

By Jerry_at_NFDF · Posted September 16, 2009
Discussion in Events and news · 0 replies
Join us on the new NFDF's social networking site. It will take some time before the word gets out but don't let that stop you from starting a discussion, entering something into your journal, or setting ...

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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.