Fabry Disease Blog

The Fabry Disease Blog has moved

fabrydisease — Fri, 03 Jun 2011 01:53:22 +0000

We have moved to a new WordPress site called Jerry’s Fabry Disease Blog which will be open about mid-June 2011. The address is http://fabrydisease.org/blog/. We hope to see you there. Jerry

Continued Fabrazyme Shortage

fabrydisease — Thu, 22 Apr 2010 12:37:19 +0000

Genzyme estimates that it will need to continue the 30 percent shipping allocation through September and that they will continue to work with minimal levels of inventory for Fabrazyme until the company’s new Framingham manufacturing facility is approved, which is anticipated to take place in late 2011. See Town Hall post. Jerry

April 28th Genzyme Town Hall

fabrydisease — Thu, 22 Apr 2010 12:34:45 +0000

Genzyme invites the Fabry community to a Town Hall meeting/Genzyme Supply Update on Wed, April 28 at 6:00 – 7:00 PM (EST) to discuss recent updates provided in the Press Release dated April 21, 2010. US Toll Free: 888‐790‐3347, US Toll: 212‐519‐0805, Passcode: Fabry. See the full press release and town hall invitation in the What’s Hot section of www.TheNFDF.org. Jerry

Expanded Access to Replagal

fabrydisease — Tue, 20 Apr 2010 11:19:38 +0000

Hi everyone, for those following this information, the 7th site is now open for the treatment protocol for Replagal. The sites are posted on http://www.clinicaltrials.gov/ct2/show/NCT01031173?term=fabry&recr=Open&rank=11 and on fabrypatients.com. Now there are sites open in New Jersey, Iowa, California, Virginia, Florida (2), and Michigan. Thanks, Jerry

Genzyme LSD Community Town Hall

fabrydisease — Thu, 25 Mar 2010 19:51:00 +0000

Fabry disease patients and family members can hear about the FDA enforcement action at the Allston manufacturing plant.

Genzyme LSD Community Town Hall
Wednesday, March 31, 2010
6:00 p.m.- 7:00 p.m. (Eastern time)
US Toll Free: # 888-469-0975
US Toll: # 517-308-9195
Passcode: Town Hall

See www.TheNFDF.org for more details.

Thanks, Jerry

Shire conference call details

fabrydisease — Wed, 03 Mar 2010 22:30:42 +0000

Shire Human Genetic Therapies is hosting a Fabry Patient Community Summit Conference Call on Thurs, March 11 at 5-6:30 PM (EST). Call approx 15 minutes before the start time at U.S. number: 800.237.9752. Participant pass code: 66075030 WEBEX DETAILS: http://www.visualwebcaster.com/event.asp?id=66476 Security password: 66…075030. You may send your questions in advance by March 7 to FabryCommunitySummit@Shire.com

Free Family Assistance Program for Fabry disease patients

fabrydisease — Sun, 21 Feb 2010 14:33:11 +0000

The NFDF has implemented a free, confidential Family Assistance Program for individuals with Fabry disease and their families. Visit the NFDF’s website to learn more at www.TheNFDF.org.

Shire HGT Fabry disease patient summit

fabrydisease — Sun, 21 Feb 2010 14:30:30 +0000

To learn about Shire HGT the manufacturers of Replagal, please participate in the Shire patient summit teleconference on Thursday, March 11, 2010 from 5:00 p.m. – 6:30 p.m. EST. Details to follow on www.TheNFDF.org. Thanks, Jerry

Fabrazyme shortage

fabrydisease — Sun, 21 Feb 2010 14:26:38 +0000

If you have Fabry disease or are a family member, please vist our Inspire page from the What Hot section of our website at www.TheNFDF.org and tell us how the Fabrazyme shortage is affecting you.

Fabrazyme shortage Town Hall

fabrydisease — Wed, 03 Feb 2010 21:01:58 +0000

The next Fabrayzme supply audio-conference Town Hall is scheduled for Tuesday, February 23rd at 6:00 – 7:00 PM. The U.S. Toll Free phone number is: 800-779-5739. The U.S. Toll number is: 1-212-287-1826. The passcode is “Fabry”. Please partcipate if you would like to hear the latest news about the availability of Fabrazyme. Thanks, Jerry