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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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Kearns Boy Gets Monster-Size Dream Come True
Monday, August 16, 2010
KEARNS -- This weekend, Rocky Mountain Raceway is hosting a National Monster Truck eventThe raceway expects thousands of fans to attendOne young boy from Kearns won't be able to attend, but that didn't matter Friday morning when two huge big rigs went to visit himOn October 27, 1998, Melanie Han
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Merseysider's Coast to Coast Challenge for Alzheimer's Research
Monday, August 16, 2010
Builder, Phill Cowley, aims to raise over £1,000 for the Alzheimer’s Research Trust, the UK’s leading dementia research charity, by travelling coast to coast across Britain by kayakWeather and tide conditions permitting, Phill will set off from Cleethorpes, at the mouth of the Hu
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Sunshine Coast Man Brad Gibson Needs $500,000 a Year for Myozyme to Fight Pompe Disease
Friday, August 13, 2010
The 44-year-old Sunshine Coast electrician has Pompe disease, a rare degenerative muscle disorder which if left untreated leads to immobility and death by respiratory failureThere is a fortnightly treatment, Myozyme, and until recently this was provided free to 16 Australians by its maker Genzyme
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Boxers Ready for Mountain Bout
Friday, August 13, 2010
Fundraising boxers are to hit the steep slopes of the country's highest mountain for a charity bout, organisers revealedSeveral fighters, including the country's first female professional boxer, have been lined up for the uphill battle on the summit of Carrantuohill on SaturdayPromoters are plann
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Parkinson's Patient Climbs
Friday, August 13, 2010
BILLINGS -- About 90% of people diagnosed with Parkinson's Disease are over age 50, with age 40 considered Young OnsetOne Montana woman, diagnosed at age 25, seeks to inspire others by conquering her diseaseTwenty-nine year old Brandi Roman has lived with Parkinson's Disease for the past four yea
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New Vaccine Requirement for Incoming College Students
Friday, August 13, 2010
DENTON -- Like most college students, Jamie Schanbaum loves riding a bike, but she steers with hands missing fingers and pushes with legs fitted with prostheticsSchanbaum is the poster child for what bacterial meningitis can do to the unvaccinated. She contracted the disease as a sophomore at the
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Local Family Struggles With Sanfilippo
Friday, August 13, 2010
Shannon Tootill was a beautiful babyAlways smiling, the blonde-haired cherub walked and talked right on schedule, and learned the alphabet by age 2. But by age 4 she began lagging behind other children, talking less and forgetting skills once learnedAs Shannon got steadily worse, An and David Too
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Rare Disease Turns Joints, Urine Black
Thursday, August 12, 2010
Shane Blamires deals with quality-of-life issues dailyAs a respiratory therapist, his job is to make life for people with chronic ailments as comfortable as possible. But, as an alkaptonuria patient, he struggles with managing his own disease with very few treatment optionsBlamires, a 38-year-old
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Once a Sickler, Now Fully Healed From the Disease
Thursday, August 12, 2010
In Uganda the dilemma of a sickle cell sufferer and the immediate family goes beyond grappling with the overwhelming health effects of the diseaseThe deeply-rooted stigma from society alone causes families to sometimes hide their sick for fear of being labeled cursed and eschewed from social funct
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Renowned Researcher Begins Study on Rare Disorder
Thursday, August 12, 2010
There are hundreds of birth disorders, and the number of kids and families affected grow every yearMany families also face the difficult problem of dealing with disorders that can’t be identified, or sometimes even misdiagnosed. That’s where Dr. Kenneth Lyons Jones comes inDr. Jones i
