Welcome !
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" to help Dermatologists recognize Fabry disease. We can join together to provide education opportunities that can change someone's life. See the Fabry Disease Skin Findings tab on the right margin in the Education tab just above.
The next Fabrazyme shortage townhall is scheduled for Tuesday, Febuary 23rd at 6:00 PM. See details below.
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HIRE filed an application with the FDA for approval of Replagal (R) to treat Fabry disease in the U.S. See the News Section below for more details.
The first NFDF e-newsletter was distributed on November 18th. The 2nd e-newsletter will be distributed soon. Sign up in the What's Hot section below. Also, register with the NFDF on the home page to receive the expanded paper "Fabry Focus" newsletter in the beginning of 2010. If you are already registered, please ensure your contact information is up to date.
The FDA approved early access to Replagal (R) as Shire announces their intent to apply to provide commercial therapy in the U.S. See the news section below for more information. Select "more" then "The latest Fabry disease news". Patients and physicians can contact Shire for more information at 1-866-888-0660, or
http://www.onepath.com
. If you tried contact and got voice mail, you will now reach a support person with the expanded support staff. Try again. The NFDF has entered the era of social networking!
See the "Social Networking" section near the bottom of the Home Page in the "What's Hot" section directly below to the left. The NFDF was approved by Victory Junction Gang Camp for a Fabry Family Weekend Camp on September 17-19, 2010. Please see more information in the "Featured Program" section at the lower-middle section of the Home Page.
Find an update on Amicus Phase 3 clinical trials in the Research tab at the top right of the Home Page. Select clinical trials then Amicus Fabry Program Begins Phase 3 links on the left right menu bar.
Upcoming Events
Genzyme town hall about Fabrazyme (R) shortage is Feb 23rd. Time: 6:00-7:00 PM (EST), US Toll Free: 800-779-5739, US Toll: 1-212-287-1826, Passcode: Fabry
Select "The Latest Fabry Disease News" in the News Section below for other stories and updates about Fabry disease and related topics.
For info contact Jerry at
jerry.walter@TheNFDF.org
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Updated Dec 31, 2009
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