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- FDAs Orphan Drug Workshop Featured in Wall Street Journal – Push To Cure Rare DiseasesBelow is a story that ran in today’s Wall Street Journal (Page A 3) on the FDA workshop I attended a few week ago at the Keck Graduate Institute in Claremont, CA. We filed an orphan drug application for Cyclodextrin for the treatment of Niemann Pick Type C disease, an ultra rare cholesterol disease that [...] […]
- FDA Does Not Approve Actelion’s Zavesca in US – Distressing News For Niemann Pick Type C CommunityActelion, the makers of Zavesca, today put out a brief statement saying that the U.S. Food and Drug Administration did not approve Zavesca and wants more information from the company on treating Niemann Pick Type C, a rare and dementing neurological disease that afflicts our six year old identical twins, Addi and Cassi. Niemann Pick Type C disease is caused […]
very good page.
they dont lose the hope.
Marcelo
I love the new pics. As always, you all are in my heart, mind and prayers.
Thanks Kara! We still have more pictures to put up but this will give us a start. Certainly more flexibility than the original BriParDun site! Hope all is well. When is the next wine tasting event for networking. I was telling Jennifer about it.
Thanks! Keep up the great work! I will add your link to our site and http://www.npcfund.org! Could you add ours to yours?
The site is coming along very nicely…pictures and videos are great! I hope all is well with you guys!