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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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Brain, Blood, and Iron: Advances…
13–14 March, 2010
The overall objectives of this workshop are to: (1) define NA and NBIA…
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Diamond Blackfan Anemia…
13–15 March, 2010
This conference is expected to generate immediate and long-term…
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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…
Events
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Rare Diseases in the Spotlight
Monday, February 15, 2010
PINJARRA residents Sue, Serena and Melissa Scott have become some of the driving forces behind the second International Rare Disease Day to be held in AustraliaTwenty eight-year-old Serena was diagnosed with rare metabolic disease Cystinonis as a childShe is now one of just 36 in Australia with t
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Clearfield Boy's Kawasaki Disease Came at a Tough Economic Time for Family
Monday, February 15, 2010
CLEARFIELD -- KawasakiOn Christmas morning, that word meant a motorized play toy under the tree for an excited year-old Clearfield boyBut Tristan Antholz started to get sick that night, way too sick to playNine days later, doctors saved Tristan's life when he was diagnosed with a disease that ha
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Burtonwood Man Takes on Killing Fields
Friday, February 12, 2010
A brave Burtonwood man took part in a gruelling assault course which involved running through fire, for his disabled daughter, who has a rare genetic diseaseAndy Stevenson and former Warrington Wolves prop forward Mark Hilton completed the world famous Tough Guy event in Wolverhampton on January 3
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Petaluma Native Derek Tennyson Is One of Thousands of People on the Waiting List for an Organ Transplant
Friday, February 12, 2010
Just a few years ago, Derek Tennyson was a healthy, busy young man in his mid-20s enjoying a career as a cabinetmaker and woodworkerHe was also a volunteer with Sonoma County Regional Parks, donating more than 800 hours of his time before something began to go terribly wrong with his healthEarly
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Gadsden County Mother, Daughter Have Rare Disorder, Spread Awareness
Friday, February 12, 2010
Her smile is as bright as any 2 year old, but Langley's story is a little more unique than many kids her ageLangley and her mother Lauren were both born with a disorder called ectodermal dysplasia. It involves defects of the hair,skin, teeth, and sweat glandsIt's an inherited disorder so Lauren k
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Cowlersley Dad John Pierre-Madigan to Help Little Jemiah, 5, by Running London Marathon
Friday, February 12, 2010
She is a youngster with a lovely smileBut five-year-old Jemiah Pierre-Madigan is also a youngster battling a terrible condition, which could end her lifeNow her dad is to take to the streets of help her and other children like herProbation officer John Pierre-Madigan will be running the London M
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Rare Disorder Affects Two Texoma Boys
Friday, February 12, 2010
It's estimated about 1% of American children have autismThat's about 1 in every 110 births. Now imagine if both of your children were diagnosed with Autism, only to find out that's not all they have. Caden and Lucas Wolsey of Bowie, Texas were diagnosed just this past fall with a rare genetic diso
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Girl's a Doozy of a Dozer
Thursday, February 11, 2010
They call her the real "Sleeping BeautyA 15-year-old English girl suffers from a rare disease that forces her to sleep for nearly two weeks at a timeLouisa Ball used to be like any other teenager, until she became stricken with the rare Kleine-Levin Syndrome in October 2008"She had a dose of flu
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Understanding the Tics of Tourette's
Thursday, February 11, 2010
A stand-up comedian, a ventriloquist who performs for children and a high school sophomore are among the people who share their stories about living with Tourette’s syndrome in the latest installment of Patient Voices. The often misunderstood condition can cause a range of tics, including Th
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Disabled Man Unhappy With Lack of Handi-Trans Service
Thursday, February 11, 2010
SYDNEY MINES -- A disabled Sydney Mines man with a rare muscle disorder is looking for equal access to Cape Breton Transit’s handi-trans bus service“It’s like being a prisoner in your own home,” said Louis Cantwell. “Even though I’m disabled, mentally I’m
