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Ireland
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United States
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NBIADisorders

  1. @rarediseasefdn Thanks for the retweet! 11:47 AM May 25th via Twitter for iPhone in reply to rarediseasefdn
  2. Parties, picnics, bowling, and more! What are you doing to celebrate Memorial Day this weekend? twitter.com/NBIADisorders/… 8:11 AM May 25th via web
  3. We have more new NBIA photos on our Facebook page, this time from Cheryl & family! Head on over to facebook.com/NBIADisorders to check them out! 8:09 AM May 25th via web
  4. Katie Beckett, Who Inspired Health Reform, Dies at 34 nyti.ms/Kbd253 5:33 PM May 24th via Tweet Button
  5. Check out photos from Laney's Poker Run on our Facebook page. Thanks for sharing, @RauscherM44! facebook.com/NBIADisorders 5:17 PM May 24th via web
  6. You are not alone! Join a rare disease community for info & support: @MarbleRoad @patientslikeme @bensfriends @teaminspire @UpliftingAth 12:16 PM May 21st via web
  7. @teaminspire Thanks for favoriting our tweet! 12:12 PM May 21st via web
  8. Stay up-to-date on #raredisease info on Twitter. Follow: @RAREproject @RareGenomics @rarediseasefdn @rarediseaseUK 6:41 AM May 21st via web
  9. @RareProject would like you to save the date for thier 1st Annual "Tribue to Champions of Hope" on Sept. 27th in CA: bit.ly/JCY0WH 12:50 PM May 15th via Tweet Button
  10. @rsleaper How has your family been? Any news in your neck of the woods? 1:28 PM May 10th via web
  11. @RauscherM44 Tell us about your event! How did it go? 1:27 PM May 10th via web
  12. @causes @SoldierGirl3 @evans3_w @yellowroseforev Thanks for the RT and for raising awareness for #raredisease research! 8:53 PM Apr 26th via web
  13. Increased research for rare diseases! RT @causes Sparking some conversation: if there was one thing you could #change... what would it be? 2:51 PM Apr 26th via web in reply to causes
  14. Thanks for the follow, @RareDiseases ! We are proud to support NORD. 2:47 PM Apr 26th via web
  15. Did you recently attend a NBIA related event? If so, please send in photos of you and your family in action to socialmedia@nbiadisorders.org 2:44 PM Apr 26th via web
  16. Mark your calendars! @RAREproject is hosting the RARE PATIENT ADVOCACY SUMMIT on Sept. 28, 2012 at the Balboa Bay Club in Newport Beach CA 1:32 PM Apr 26th via web
  17. Check out this inspiring article from @GlobalGenes and @RAREproject: RARE Olympic Champion of Hope Introduced: hosted-p0.vresp.com/609011/df605df… 1:30 PM Apr 26th via web
  • Name NBIA Disorders
  • Location USA
  • Web http://www.nbiadi...
  • Bio NBIA = Neurodegeneration with Brain Iron Accumulation. Includes Hallervorden-Spatz Syndrome, Aceruloplasminemia, PKAN & INAD. www.facebook.com/NBIADisorders
96 Following 57 Followers 1 Listed
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