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.


 What's Hot
 NFDF on Facebook
 NFDF on TWITTER
 Get INSPIRED Today
 The NFDF is LinkedIn
 Fabry Disease e-Newsletter Sign Up
 Fabry Disease News Blog
 Become an NFDF member



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 .

Terms of Use

 Quick Links
 Fabry Disease Remembrances and Recognition
 Basic Genetics for Understanding Fabry Disease
 Glossary of Terms for Understanding Fabry Disease
 Contact The NFDF


Greetings! Welcome to the NFDF website, the doorway to our organization. . . . more

30,000 Suspected number
in U.S.
2,000? People who know
Unknown Individuals on
treatment

 

Terminology used



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


Social Networking


Group Discussions
Private Discussions
Journals
Notifications

The Faces of Fabry




Copyright 2009, The National Fabry Disease Foundation

Ethics & Values | Privacy Policy | Conflict of Interest Policy | Terms of Use

38160