A boy from Bulls suffers from a rare congenital disorder and doctors were left in a dilemma about how to deal with the same. Reece Jimmieson, 3, suffers from what the medical science terms as Goldenhar syndrome. The disease is so rare that the boy is thought to be the only case in New ZealandThe c

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The family of a Tayside baby who “a cold could kill” have spoken of their hope of a cureWith the opening of a fundraising shop in Carnoustie, one-year-old Blake McMillan’s family want to contribute towards a cure for the rare genetic disorder, of which Blake is among 150 cases in the worldB

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To his devoted mum Shazeeda, five-year-old Amaan Iqbal is a son in a millionBut to the medical profession, he is one in 250 millionFor Amaan – known affectionately by his family as ‘Amaani’ – suffers from the rare recessive genetic disorder Micro SyndromeThere are only 13 diagnosed cases

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When Maya Reilly, 7, first spiked a fever of 102.5, her mom, Dina, did what any worried mother would do -- giving her child Tylenol and Motrin and taking her to the pediatricianBut, as Maya’s fever continued to climb, and she developed a rash across her body, Dina and her husband Dennis knew som

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Arlene, the heroine of “Arlene on the Scene,” a children’s novel about a Rhode Island fourth grader with a debilitating muscle disorder, is a girl trying to fit in with the kids in school. In the real world, she represents about one in 2,500 people in America who suffer from Charcot-Marie-Too

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NEW YORKPrograms provide practical life skills tools to help people with inherited bleeding disorders live life on their own termsWorld Hemophilia Day is April 17AMA Enterprise, a division of American Management Association, has partnered with Biogen Idec, a global research-based biotechnolo

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NORTH CHICAGO, Ill. - Emmy-nominated actress Sofia Vergara is helping to raise awareness about the importance of diagnosing and treating hypothyroidism, a thyroid condition that affects millions of Americans, through a new campaign called "Follow the Script." The campaign, made possible by AbbVie

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Liestal, Switzerland, April 16, 2013 - Santhera Pharmaceuticals (SIX: SANN) announced today that the Phase III DELOS study of orally administered Catena® in patients with Duchenne Muscular Dystrophy (DMD) successfully passed a planned futility and safety analysis.

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SANDPOINT — More than 100 skiers and snowboarders shredded ’til they dropped Friday and Saturday, striking a major blow against cystinosis in the processAccording to event officials, 24 Hours of Schweitzer — a fundraising partnership between nonprofit 24 Hours For Hank, Schweitzer Mountain R

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MONTREAL, April 16, 2013 /PRNewswire/ -- The global bleeding disorders community will come together on April 17 to mark World Hemophilia Day. This event takes on a special significance as it coincides with the 50th anniversary of the World Federation of Hemophilia (WFHTo commemorate its 50th anniv

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