Hadley Hope - Raising Awareness of Niemann- Pick Type C Disease
 

 

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NPC drug approved in Canada, but not U.S.

So, to add insult to injury:  About 1 week after the FDA denied the drug Zavesca for use as a treatment for NPC in America, the same drug was APPROVED in Canada!!  This now means that places like: The European Union, Korea, Brazil, Russia, Australia, and more…have all approved the only drug that is available to help slow the progress of NPC disease.  But, for the FDA, the findings were not good enough, so that means that the 50% of families in the U.S. that are not able to get the drug off label through their insurance, will still not be able to get it.  Absolutely heartbreaking, as many families we’ve spoken to were banking on the FDA approval earlier this month.  We are very thrilled for the families in Canada however.  We sincerely hope the FDA will take another look at approving it, as they have indicated they would “at some time”:  http://www.tradingmarkets.com/news/stock-alert/aliof_zavesca-r-miglustat-first-treatment-available-in-canada-for-rare-progressive-niemann-pick-type-c--866100.html
 
In better news:  Goodsearch now has provided a Hadley Hope toolbar that you can download, to help remember to use it as your search engine, and support the Hadley Hope Fund at the same time.  From April 6th to the 9th, they are offering $1 for every toolbar downloaded, so please consider dropping your Google toolbar, and using Goodsearch!
 
Directions to Get Your Direct Toolbar Link (URL)
 
To generate your customized toolbar download page, please follow these steps:
 
  1. Go to www.goodsearch.com
  2. Enter your cause into the "Who do you GoodSearch for" box
  3. Click on "Get the GoodSearch toolbar"
  4. Copy the url from that page - that is your customized toolbar download page
 
Thank You!
Bryan and Laura
www.hadleyhope.com
 



 


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