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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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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…
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2010 International Research…
9–11 April, 2010
The broad objectives for the 2010 LAM Research Conference are to review…
Events
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Wishes Come True for a Caring Brother and Sister
Thursday, February 25, 2010
Super siblings Steven and Sarah Scanlan each enjoyed a day to remember as a reward for their caring naturesThe pair have taken on greater responsibilities as their older brother Jason, 19, has a rare genetic disorder and is severely mentally and physically disabledJason was born with Cornelia de
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Blood Drive Organized in Support of Mandeville Leukemia Patient
Thursday, February 25, 2010
St. Tammany Parish's 12th Fire Protection District will hold a blood drive Saturday for a local resident who is battling leukemiaOn behalf of Marshal Packer, a Bloodmobile will be stationed Saturday from 10 a.m. to 2 p.m. in the parking lot of Walmart on U.S. 190 south of CovingtonPacker, 64, of
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Sport Clips Rallies to Help Rock Hill Baby
Thursday, February 25, 2010
In some ways, Evan Klein is a typical 5-month-old boyHe coos. He likes to see himself in the mirror. His face lights up when his parents come into a roomBut Evan’s short life has been anything but typical so far. He was born with Dandy-Walker malformation of the brain -- a rare condition th
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Runners Heading to Antarctica
Wednesday, February 24, 2010
HILLTOWN -- If you’ve ever thought this past winter has made the region feel like Antarctica, just check back with Steve Kendra, Bill Hardy or Bill Edmonds in about a monthBy then, they’ll be back from the real thing: the three are part of a dozen-person group running a 26.2-mile marat
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Aidan's Story
Wednesday, February 24, 2010
Aidan Grasmick loves exploring Alaska, sloshing down his family’s homemade water slide and Harry PotterLike most 12-year-olds, the Palmer boy enjoys attending sporting events and couldn’t keep from grinning ear-to-ear when he had a chance to touch the Stanley Cup, the storied champions
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Blood Drive for Delilah
Wednesday, February 24, 2010
Delilah Leusch has one of the rarest disorders in the worldIt's called Diamond Blackfan anemia, and it has made her beholden to those who donate blood"We hadn't really given that much thought to donation, but now it's one of the most important things in our lives," said Delilah's mother, Dana Gre
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Anglesey Mum Walks Two Million Steps to Save Disabled Daughter
Wednesday, February 24, 2010
A disabled mum will walk two million steps in agonising pain on crutches in a bid to save her daughter from being left paralysed by a rare brain disorderSusan MacPherson’s daughter Charlotte has to use a wheelchair because of a condition known as Chiari malformation. This causes a hernia of
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Swimmer Bound for the Big Time
Tuesday, February 23, 2010
GOODNA -- Swimmer Elle Mills, robbed of her sight but not her sporting vision, has qualified for the Australian National Championships in Sydney next monthSuccess at the championships will bring the Tony Keogh-coached Mills one step closer to realising her dream of competing in the 2012 Paralympic
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Friends Unite to Give Max What He Gave Them
Tuesday, February 23, 2010
LAST year, 1960s pop stars Max Merritt and Billy Thorpe, who co-headlined the first Sunbury pop festival in 1972, were aghast at the illnesses that had afflicted their peersThey decided they should hold a one-off, all-star benefit concert and put the proceeds in a trust fund for struggling musicia
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Donate Part of Her Liver? ‘It Was an Easy Choice’
Tuesday, February 23, 2010
In less than a month, two co-workers at Maine Coast Memorial Hospital in Ellsworth will be joined forever by an unlikely bond: a liverJan Watson, 46, of Surry, a registered nurse at the hospital, suffers from a rare disease which requires a liver transplantAlthough the process of finding a suitab
