Welcome !
The NFDF offers free, confidential counseling and family assistance. See details in the lower middle section of the home page below. Having Fabry disease is stressful. Would you like to talk with someone? The first clinic to be approved for the Repalgal early access treatment IND program is in Stuart, FL. See details at
this link Replagal tIND Study
on the clinicaltrials.gov website.
Patients and physicians can contact Shire for more information at 1-866-888-0660, or
http://www.onepath.com
.
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. See the Fabry Disease Skin Findings tab at the bottom of the right margin in the Education tab just above.
SHIRE 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 two editions of the NFDF e-newsletter have been distributed with a 3rd e-newsletter being distributed soon. Sign up in the What's Hot section below.
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.
Upcoming Events
Shire Human Genetic Therapies (HGT) hosts a Fabry Patient Community Summit Conference Call on
Thursday, March 11th at
5:00-6:30 PM (EST).
Call the dial-in number approx 15 minutes
before the start time:
U.S. dial-in number: 1.800.237.9752
Participant pass code: 66075030
WEBEX DETAILS:
http://www.visualwebcaster.com/event.asp?id=66476
Security password: 66075030
For info contact Jerry at
jerry.walter@TheNFDF.org
visitors as of .
Greetings! Welcome to the NFDF website, the doorway to our organization. . . . more
News
Read all about it!
Fabry disease news,
NFDF news, etc.
Updated Dec 31, 2009
Featured Program
Our families are invited for a family weekend at Victory Junction Gang Camp
. . . more
Family Assistance Program
Free, confidential counseling and family assistance.
Would you like to talk with someone? . . . more
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