http://rarediseases.about.com/ Rare Diseases http://rarediseases.about.com/b/2009/07/14/texas-finally-adds-cf-testing-to-newborn-screening.htm Every state in the U.S. tests newborns for cystic fibrosis (CF), an inherited exocrine disorder, except Texas. In December 2009 that will change, as Texas is finally adding CF testing... http://rarediseases.about.com/b/2009/07/14/texas-finally-adds-cf-testing-to-newborn-screening.htm 2009-07-14T19:53:35Z http://rarediseases.about.com/b/2009/07/12/xeroderma-pigmentosum-2.htm Most people take care not to be exposed too long to the sun. People with xeroderma pigmentosum (XP) can't be exposed to sunlight at all because, due to a genetic... http://rarediseases.about.com/b/2009/07/12/xeroderma-pigmentosum-2.htm 2009-07-12T08:13:25Z http://rarediseases.about.com/b/2009/07/09/summer-schooler-arrives-with-his-own-aed.htm During the summer I work as a nurse in one of the city's summer school programs for children with special needs, so I am used to children arriving at school... http://rarediseases.about.com/b/2009/07/09/summer-schooler-arrives-with-his-own-aed.htm 2009-07-09T16:26:48Z http://rarediseases.about.com/b/2009/07/08/tracleer-bosentan-receives-eu-approval-for-treating-pah-in-children.htm On July 6, 2009, Actelion Ltd announced that the pediatric dispersible formulation of Tracleer (bosentan) for the treatment of pulmonary arterial hypertension (PAH) in children has been approved in the... http://rarediseases.about.com/b/2009/07/08/tracleer-bosentan-receives-eu-approval-for-treating-pah-in-children.htm 2009-07-08T08:09:56Z http://rarediseases.about.com/b/2009/07/05/gastroschisis-2.htm About 1 in 5,000 infants in the United States is born with gastroschisis, a birth defect in which an infant is born with some or all of his/her intestines on... http://rarediseases.about.com/b/2009/07/05/gastroschisis-2.htm 2009-07-05T08:06:47Z http://rarediseases.about.com/b/2009/07/01/23-people-hospitalized-from-e-coli-outbreak-in-beef.htm The Centers for Disease Control and Prevention (CDC) is reporting that 23 people in 9 states have been hospitalized due to eating bad ground beef. The beef, from the JBS... http://rarediseases.about.com/b/2009/07/01/23-people-hospitalized-from-e-coli-outbreak-in-beef.htm 2009-07-01T20:52:38Z http://rarediseases.about.com/b/2009/06/30/major-league-baseball-to-fight-4als-awareness-this-july-4th.htm New York Yankee player Lou Gehrig gave his famous farewell speech to baseball fans in a ceremony between games of a doubleheader at Yankee Stadium nearly 70 years ago. He... http://rarediseases.about.com/b/2009/06/30/major-league-baseball-to-fight-4als-awareness-this-july-4th.htm 2009-06-30T08:08:31Z http://rarediseases.about.com/b/2009/06/28/waiting-for-a-diagnosis.htm If you’re facing a possible life-changing diagnosis -- and most rare diseases fall into this category -- waiting for a diagnosis can be very stressful. Waiting for test results, waiting... http://rarediseases.about.com/b/2009/06/28/waiting-for-a-diagnosis.htm 2009-06-28T08:22:08Z http://rarediseases.about.com/b/2009/06/23/scott-pelley-of-cbs-60-minutes-voices-pku-public-service-announcement.htm Phenylketonuria (PKU) is an inherited metabolic disorder. Scott Pelley of CBS' 60 Minutes has added his voice to a public service announcement about PKU for the National PKU Alliance. You... http://rarediseases.about.com/b/2009/06/23/scott-pelley-of-cbs-60-minutes-voices-pku-public-service-announcement.htm 2009-06-23T08:06:45Z http://rarediseases.about.com/b/2009/06/21/klippel-trenaunay-syndromes.htm Three similar blood vessel disorders are called Klippel-Trenaunay syndrome, Klippel-Trenaunay-Weber syndrome, and Sturge-Weber syndrome. All three are present at birth and cause malformations of the blood vessels and changes in... http://rarediseases.about.com/b/2009/06/21/klippel-trenaunay-syndromes.htm 2009-06-21T09:17:16Z