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CheckOrphan NewsFlash, March 2,…
3/02/2010
CheckOrphan NewsFlash for Tuesday, March 2, 2010: breaking news about rare diseases, orphan diseases, orphan drugs, and…
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CheckOrphan NewsFlash January 15,…
1/15/2010
CheckOrphan NewsFlash for Friday, January 15, 2010: breaking news about rare diseases, orphan diseases, orphan drugs,…
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CheckOrphan NewsFlash January 11,…
1/11/2010
CheckOrphan NewsFlash for Monday, January 11, 2010: breaking news about rare diseases, orphan diseases, orphan drugs,…
NewsFlash
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Interdisciplinary Training…
15–16 March, 2010
The goal of this meeting is to mentor the career development of a “…
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ICORD 2010: Sixth International…
18–20 March, 2010
The VI International Conference on Rare Diseases and Orphan Drugs (ICORD…
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Improving Musculoskeletal Outcomes…
7–9 April, 2010
The goals of this workshop are to (1) assess the state of knowledge…
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Third NIH Workshop on Gaucher…
8–9 April, 2010
Workshop goals are to (1) determine the appropriate human, animal, or cell…
Events
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1,000,000 to 1
Friday, February 19, 2010
Huntersville -- The story of 4-year-old Holt Grier is one of a kid who has been repeatedly beaten by the oddsA devastating, rare disorder that affects only 500 children nationwide attacks his body. Daily treatments leave him so nauseated he can only stomach food a few hours a dayNow, it’s h
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Battling Toddler Fights Leukaemia
Thursday, February 18, 2010
A Gwent toddler who beat two rare illnesses before she was two years old is back in hospital battling leukaemiaTwo-year-old Olivia Morgan from Undy was diagnosed with the potentially fatal Vein of Galen malformation three days after she was born in December 2007The condition, which affects around
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Disabled St. Albans Schoolboy Skydives for Charity
Thursday, February 18, 2010
A thrill-seeking disabled teenager living with a rare genetic disorder will fulfill a life-long dream by leaping out of a plane in aid of a charity close to his heartGlen Shorey, 16, of Corinium Gate, St Albans, has been left wheelchair-bound by his condition, medically dubbed Freidreich's ataxia,
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Clare Says a Big Thank You After Beating Illness
Thursday, February 18, 2010
Clare Sutton, 33, from Kettering, was diagnosed with Common Variable Immunodeficiency (CVID) in 2007The condition has affected her immune system all her life, although it was not until three years ago that she was diagnosed with it. Without weekly injections of antibodies into her bloodstream her
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Challenged No End, She Stays Cheerful
Thursday, February 18, 2010
Suffering makes one beautiful only if he or she bears it with cheerfulness, not with insensibility, but through greatness of mind and purity of heartThis must be the main reason Maria Kathrina “Kcat” Lopez Yarza, 26, has amiably endured the series of tests in her lifeOn Friday, the 13
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Cisco-Certified Russell Eighth-Grader Ahsan Zahid Dreams Big, Lives Large
Thursday, February 18, 2010
Ahsan Zahid may dream big but he lives even largerHe is fueled by passions so wide and deep, using every waking moment to reach his countless goals that seem to only multiply the more he achievesZahid's most recent accomplishment: becoming a Cisco Certified Network Associate after completing a tw
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Legally Blind Skier Embodies the Olympic Ideal
Wednesday, February 17, 2010
Everyone who experiences an Olympics has an indelible moment that might linger for a lifetimeOne of them might be the triumph of Brian McKeever, proof in the flesh that when life throws you a twist, sheer tenacity and dream power can put you back at the top of the worldAs a boy, McKeever dreamt o
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Cutting Hair to Fight Rare Disorder
Wednesday, February 17, 2010
Katelyn Haney is a unique 31/2-year-oldMost parents will say their children are special, and Tony and Shelley Haney are no exceptionBut they also know their happy little girl is unique in a way that doesn't put a smile on anyone's faceThe child has an extraordinarily rare genetic condition calle
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Peon's Three-Year Suffering Ends
Wednesday, February 17, 2010
MUMBAI -- Antop Hill resident Arun Mane speaks with a slight slur, but his eyes sparkle with delightHe has a reason to be happy as, in the next few weeks, this slur too will disappearUntil a fortnight ago, he could not speak clearly, swallow or stand straight due to a rare disorder called Meige&r
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A Rare Malady, but Hope Lives
Wednesday, February 17, 2010
CHARLTON -- Debra A. Beaudette, 52, knew something was wrong about 17 years agoShe was outside, working with young children at the Capen Hill Nature Sanctuary“I was walking in the woods with some 7-year-olds, and I kept falling. I was falling a lot,” she said recently in her loft apar
