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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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Only Five Children in U.S. Share Rare Disease of Danielson Boy
Tuesday, March 2, 2010
Danielson, Conn. -- Connor Thompson is a special boyThe 4-year-old from Danielson loves “Thomas the Tank Engine” and the movies “Bolt” and “Cars.” He loves to play outside, ride his bike and wants to be a race car driver when he grows upConnor Thompson also suf
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Buffalo Man Shares His Story on World Rare Disease Day
Monday, March 1, 2010
There are thousands of them out there, yet they only affect a small amount of peopleThey are rare diseases. Most of you don't know much about them, but word is getting out. Sunday, February 28th marks World Rare Disease Day. The idea is to give hope and information to people facing these health ch
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Kilt Proves Relief for Scot Struck Down by Rare and Agonising Disease
Monday, March 1, 2010
A Scot who suffers from a rare and agonising disease has turned to the kilt for reliefStuart Collie, 35, from Oban, has Dercum's disease, which left a mass of painful tumours on his legs and abdomenAnd the only clothing he can wear with any comfort is the kiltHe revealed yesterday: "I just can't
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Benefit Held for Infant With HLH
Monday, March 1, 2010
AUBURN, N.Y. -- A fundraiser is held for an infant battling a rare immune system disorderBack in November, when he was just 8 weeks old, Lucas Mallory was diagnosed with HLH, a condition in which the victim has too many infection-fighting cellsLucas's only chance of survival is a bone marrow tran
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Their Diseases Are Rare, but Their Suffering Isn't
Monday, March 1, 2010
As far as clubs go, this one's a motley crewIts inaugural Montreal meeting in a downtown hotel room yesterday brought together about 100 children and adults in wheelchairs and leg braces, a teenager with a Seeing Eye dog and a host of young families with handicapped childrenThey call themselves t
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Brave Teacher's Tribute to Dad
Friday, February 26, 2010
A disabled teacher is gearing up for a charity parachute jump in memory of her late fatherJemma Collins is taking the plunge to raise funds for the Jennifer Trust for Spinal Muscular Atrophy (JTSMA) on the one year anniversary of her father's deathJemma of Caernarvon Drive, Clayhall, said: "I was
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Mum Seeks More Rare Disease Support
Friday, February 26, 2010
A mother in Cairns is urging the community to support people with rare illnesses, during Rare Disease Day this SundayMeagan Cross's daughter was diagnosed with Angelman Syndrome two years ago, a disease that delays a child's developmentShe says there is not enough community awareness or support s
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Join PNE Stars on Run to Help Charity
Friday, February 26, 2010
Runners can join Preston North End players in a charity run this weekendJennifer Lonergan, wife of Lilywhites' goalkeeper Andrew, has arranged the event to raise money for the Royal Manchester Children's Hospital Gem (Genetics, Enzymes, Metabolism) AppealThe charity helped the couple's three-year
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We Have to Ban Iona From Treats... In Case She Eats Herself to Death
Friday, February 26, 2010
Alan and Elaine Auld would love nothing more than to be able to give their 22-month-old daughter Iona an occasional sweet treatBut the proud parents have been forced to chuck out chocolate and bin biscuits - because they could kill the toddlerLittle Iona suffers from Prader-Willi Syndrome, a rare
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'Rookie' Republican Plans to Challenge Pashinski in Fall
Thursday, February 25, 2010
There was a time more than six months ago when Jim O'Meara feared ordering at the deliHe wrote his order for lunch meat on a slip of paper and hoped the people behind the counter didn't ask questionsIf the clerks did, chances were O'Meara had no idea what they were asking. He couldn't hear themO
