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CheckOrphan NewsFlash April 30,…
4/30/2010
CheckOrphan NewsFlash for Tuesday, March 30, 2010: breaking news about rare diseases, orphan diseases, orphan drugs,…
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CheckOrphan NewsFlash April 9,…
4/09/2010
CheckOrphan NewsFlash for Friday, April 9, 2010: breaking news about rare diseases, orphan diseases, orphan drugs, and…
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CheckOrphan NewsFlash April 1,…
4/01/2010
CheckOrphan NewsFlash for Thursday, April 1, 2010: breaking news about rare diseases, orphan diseases, orphan drugs,…
NewsFlash
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Men 2010: 12th International…
16–18 September, 2010
This two-day meeting will provide a forum for educating basic and clinical…
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Ribonuclease H2010
20–22 September, 2010
We expect to bring together scientists interested in making as much…
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Third Annual Ultra Orphan…
27–29 September, 2010
Centric Health Resources Presents Third Annual Ultra Orphan Conference…
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Brain, Blood and Iron: Joint…
1–2 October, 2010
The overall objectives of this workshop are to (1) define NA and NBIA…
Events
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'You're One in 750 Million'
Tuesday, August 10, 2010
A woman with one of the world’s rarest lung conditions – only one in 750 million people have it – has issued a desperate plea for donorsTheresa Sandeman-Charles, 50, is only the eighth person in medical history to contract idiopathic pleuroparenchymal fibroelastosis (IPFIPF caus
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Mother Plans Fundraiser to Raise Awareness About Daughter's Rare Genetic Disorder
Tuesday, August 10, 2010
Summit Township resident Debbie Brockie was “overwhelmed” when doctors diagnosed her 1-year-old daughter, Molly, with a rare genetic disorderMolly, now 5, has Angelman Syndrome, a disorder that primarily affects the nervous system and can cause developmental delay and severe speech imp
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Diagnosis Gives Mom's Mission a Sense of Urgency
Monday, August 9, 2010
STOCKTON -- Lisa Macht, 43, housewife, mother of two teens, would at first glance seem to be living the All-American life in her suburban home in a quiet north Stockton neighborhoodIf she didn't tell you she is suffering from a rare disorder known as Behcet's disease that causes chronic inflammati
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Girls Work Hard to Give Brother the Gift of Life for Rakhi
Monday, August 9, 2010
The two little girls—Shrishti and Muskan, aged thirteen and nine—have been trying to collect money by polishing shoes on the streets of Uttar Pradesh's industrial town of Kanpur for the treatment of their elder brother, who is suffering from a rare diseaseTheir brother, 14-year old Anu
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Battle Against Cancer
Monday, August 9, 2010
WILKES-BARRE -- We all know or have heard of someone who has been diagnosed with cancer, and with that diagnosis comes the hardships of locating, battling and ridding it from the bodyWhat if with the help of fundraising and research, battling cancer was no longer a long and turbulent roadSunday m
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Driven to Compete: Moorhead Joe Mithun Overcomes Rare Liver Disease
Monday, August 9, 2010
It’s hard to believe now, but 10-year-old Joe Mithun was always tiredWhen he came home from school he would fall asleep, often on the floorDue to a rare liver disease he wasn’t gaining weight and his growth was leveling off. He couldn’t participate in sports eitherThat’s
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Genzyme Talks Trigger Patient Jitters
Monday, August 9, 2010
CARLISLE -- Linda Rubenstein puttered around her kitchen, pink earrings flashing as she talked about her social life, her business, her teenage sonShe might not have any of those things without Genzyme Corp., Rubenstein said, as she prepared a cup of iced tea. The Cambridge biotech not only makes
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Affliction's Rarity Is Top Obstacle to Finding Cure
Friday, August 6, 2010
It's a scenario that McMinnville resident Janet Wood knows wellThe woman wakes each day to the knowledge that her 2-year-old grandson Jonah Weishaar is one of an estimated 50 to 100 children in this country afflicted with Sanfilippo Syndrome Type CShe is now on a crusade with her daughter Jill Wo
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NI Schoolboy's Surgery 'World First'
Friday, August 6, 2010
Ciaran Finn-Lynch, originally from Castleblaney in Co Monaghan but now living in Northern Ireland, was the first child in the world to undergo the trachea transplant in MarchHe was born with Long Segment Tracheal Stenosis, a rare disease which leaves sufferers with a very narrow windpipeDoctors a
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Blind Man's Best Friend
Friday, August 6, 2010
For Larry Marcum, the first difficulty he experienced when he lost his eyesight years ago was being approached by someone and not knowing if that person was trying to shake his handMarcum is legally blind due to an eye disease called retinitis pigmentosa. He has some sight in his left eye, equival
