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NPCFund

  1. Videocast of Presentation by Dr. Porter: Development of Therapeutic Interventions for Niemann-Pick ... bit.ly/Kz9rPn #RareDisease 11:52 AM May 25th via twitterfeed
  2. Quick Update on the Dudes: Brisan 2009Just a quick update on what’s been going on over here... bit.ly/LE00Bs #RareDisease #Stults 10:23 AM May 23rd via twitterfeed
  3. Discount Deadline Update for Hospital Hill Run: Hello everyone! Tomorrow will be the last day... bit.ly/JOvJeJ #NPCF #RareDisease 11:31 AM May 17th via twitterfeed
  4. Journalists looking to get your content online? ow.ly/aMuTy #content #writers #journalists 1:13 PM May 8th via HootSuite
  5. PressFolios #Journalists ow.ly/aKWJV 1:56 PM May 7th via HootSuite
  6. Pressfolios is a brand new site that, similar to Cuttings.me, offers a one stop shop for journalists looking to put their work online.... 1:55 PM May 7th via HootSuite
  7. Monica Taillefer: Monica Marie Amanda Taillefer (NPC) 8/5/09 - 5/2/12With broken hearts, we pass al... bit.ly/KePfky #RareDisease 6:25 AM May 4th via twitterfeed
  8. Update from Genzyme on ASMD Clinical Trials: Update on Clinical Trial of Enzyme Replacement Therapy... bit.ly/K1W0se #RareDisease 2:03 PM Apr 26th via twitterfeed
  9. Joshua Jaylon Garcia: Joshua Jaylon Garcia2/20/90 - 4/13/12With great sadness, we pass along word o... bit.ly/J9sZcV #RareDisease 12:47 PM Apr 19th via twitterfeed
  10. James "Wilson" Speakmon-Coleman: James "Wilson"Speakmon-Coleman4/8/93 - 4/1/12We are very sad to re... bit.ly/INLtw1 #RareDisease 8:08 AM Apr 13th via twitterfeed
  11. Meet Pete: Meet Pete. Pete came into our lives back in January 2009 while we were in DC at ... bit.ly/I2SlVK #RareDisease #Stults 4:45 PM Apr 4th via twitterfeed
  12. Kaitlyn Kay Bourgeault: Kaitlyn Kay Bourgeault (NPA)7/1/09 - 3/22/12With heavy hearts, we share the... bit.ly/GQENBW #RareDisease 6:46 AM Mar 23rd via twitterfeed
  13. : bit.ly/GEiA8V #RareDisease 12:09 PM Mar 20th via twitterfeed
  14. It’s Always A Shitty Day: So you thought this was going to be a debbie downer huh?That phra... bit.ly/GDYkB0 #RareDisease #Stults 8:15 AM Mar 20th via twitterfeed
  15. 20th Annual Family & Medical Conference: This year is the National Niemann-Pick Disease Found... bit.ly/GzKFfb #NPCF #RareDisease 3:55 PM Mar 19th via twitterfeed
  16. Kickball And Fishing: Just wanted to share a few pictures with all of you. On Friday, March... bit.ly/zxYKTv #RareDisease #Stults 4:38 PM Mar 18th via twitterfeed
  • Name Niemann-Pick C Fund
  • Location Kansas City, Missouri
  • Web http://www.NPCFun...
  • Bio NPCF was organized in Dec 2008 in order to raise awareness of Niemann-Pick Type C disease, research, and support for affected family's/individuals. It's FATAL.
132 Following 110 Followers 6 Listed
Kelly Atherton NPDG (UK) Kelly Ann Collins Marquee CardinalPR08 Organic Acidemia Asn Pharmaceutical News CLOVES Syndrome kartik chandran CLOVES Foundation Mark Underwood Heather Gautrey Connor Grant Joanne Gresty Niemann Pick Brazil iYouVo Nick Karrasch Jean Gleason Fernanda Massarico Shannon Gresty Alexis Ceule Johnny's Tavern RareDiseasesNetwork KansasCity Connected Hope for Hollie RareShare Ryan Conrad LoveFundForChildren VolunteerMark FDA/CDRH Industry raredisease_cbi Steven Keiles Steven Quay, MD, PhD GDF MLD Foundation Planet Good (tm)