http://nnsgrc.forumotion.net/feed/? Latest topics Thu, 29 Oct 2009 20:35:05 GMT 10 http://i56.servimg.com/u/f56/12/86/87/52/29037310.jpg http://nnsgrc.forumotion.net/feed/? http://nnsgrc.forumotion.net/parent-to-parent-f1/tyrosinemia-t4.htm terri7291 Hello, I am trying to find an online support group for people living with Tyrosinemia. I've looked all over and am not able to find one because it is so rare. I found this board through a google search and was hoping someone could help me. I was born with this and for 13 years of my life, lived on a strict no protine diet and eventually ended up with liver cancer and needed a liver transplant. This has been 18 years ago. This past weekend, I emailed an old doctor of mine who treated me and updated ... Parent to Parent Thu, 29 Oct 2009 20:35:05 GMT http://nnsgrc.forumotion.net/parent-to-parent-f1/tyrosinemia-t4.htm#5 http://nnsgrc.forumotion.net/parent-to-parent-f1/tyrosinemia-t4.htm http://nnsgrc.forumotion.net/parent-to-parent-f1/is-supplemental-screening-needed-in-nj-t3.htm nystateofmindmjg I just downloaded the 7/9 edition of the screening status report and it seems like NJ covers all of them. Can someone confirm? Our hospital has us signing paperwork informing us that supplemental is needed...but is it? Parent to Parent Fri, 17 Jul 2009 22:23:13 GMT http://nnsgrc.forumotion.net/parent-to-parent-f1/is-supplemental-screening-needed-in-nj-t3.htm#4 http://nnsgrc.forumotion.net/parent-to-parent-f1/is-supplemental-screening-needed-in-nj-t3.htm http://nnsgrc.forumotion.net/parent-to-parent-f1/newborn-screening-saves-lives-act-of-2007-t2.htm Lois Taylor FLA NBS Does anyone know if the new administration will be supportive of this bill? Any chance that funding will be attached? Parent to Parent Thu, 11 Dec 2008 13:51:46 GMT http://nnsgrc.forumotion.net/parent-to-parent-f1/newborn-screening-saves-lives-act-of-2007-t2.htm#2 http://nnsgrc.forumotion.net/parent-to-parent-f1/newborn-screening-saves-lives-act-of-2007-t2.htm http://nnsgrc.forumotion.net/parent-to-parent-f1/welcome-to-the-message-board-t1.htm Admin Welcome to the Newborn screening message board. This message board exists for parents, healthcare workers and others to discuss their experiences with the newborn screening process. The board will be monitored to be sure that posts are appropriate. Parent to Parent Mon, 20 Oct 2008 15:05:43 GMT http://nnsgrc.forumotion.net/parent-to-parent-f1/welcome-to-the-message-board-t1.htm#1 http://nnsgrc.forumotion.net/parent-to-parent-f1/welcome-to-the-message-board-t1.htm