Welcome !
On Aug 11th, the 1st part of a 3-part Fabry disease educational webinar series began. We hope the information was useful to you. If you particpated, please go on our facebook page (search NFDF) or our Inspire page from the Quick Links section to make a commnet.
The next part will be held on Sep 16th at 7:00 PM. Stay tuned.
NFDF, FSIG & Genzyme invite the Fabry community to a Town Hall on Thursday, Aug 26 at 7-8 PM EST. Call in at 888-989-4357 or 517-308-9001. Passcode: Fabry. Please participate in a forum to discuss the supply shortage. Town Hall invitation .
Time is getting short for families to apply to attend our expense free September 17-19 Fabry family weekend camp at Victory Junction. We are going to have a lot of fun. Please submit your online application soon. Contact Jerry at
jerry.walter@TheNFDF.org
for details.
One of our own needs our help! Please keep Phil Zahnd and his family in yours thoughts and prayers. See our recent e-newsletter or the note in the What's Hot section.
Request a silicone wristband to help raise awareness about Fabry disease. Wristbands come in sizes 9, 8, 7 and 6 inch. The six inch are very small and usually just fit children. See the What's Hot section to the left to request yours.
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?
May we have your attentiom?
Re ques t a Fabry disease wristband to increase awareness about Fabry disease.
See the What's Hot section. We began shipping wristbands on 5 May.
Please sign
up for our e-newsletter in the What's Hot section to the upper left
. A new e-newsletter and supplement were just pubished August 5 & 6.
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News
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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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