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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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They Share How to Live With Rare Diseases
Monday, August 23, 2010
BANGALORE -- If you have a disease, even as serious as malaria, you know there is a cure and that doctors can diagnose itBut have you heard of rare genetic disorders like Pompe, Gaucher, Fabry and Mucopolysaccharidosis (MPS)? These are inherited metabolic disorders that result from defects in lys
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Fundraiser Set for Jay Family
Monday, August 23, 2010
JAY -- It was a year ago when Chris and Lisa Brochu's once-active, healthy, 6-year-old son, Josh, was diagnosed with a rare, deadly genetic disease that strikes seemingly healthy young childrenA few months later, the parents learned their happy, 3-year-old daughter, Brooke, also had the diseaseTh
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People Buy Art to Help Ringtown Teen
Monday, August 23, 2010
SHENANDOAH -- People bidding on the work of local artists Sunday weren't just hoping to bring home some artwork, they were also helping a Ringtown teen in need of a lung transplantThe New Lungs For Brittany Art Show and Auction was held at Helfer's Good Eats to raise money for Brittany Zelinsky, 1
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Matthew's Liberation
Monday, August 23, 2010
It was the week the medication didn’t work that convinced Melissa ZoleckiShe thinks her son Matthew got a bottle of inactive dummy pills that week by accident. And the change in his behavior was strikingHe was back to banging his head against the wall. He struggled to concentrate again at s
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Ross Perot Commits $20 Million to UT MD Anderson Cancer Center
Monday, August 23, 2010
Dallas businessman and philanthropist H. Ross Perot has donated $20 million to The University of Texas MD Anderson Cancer Center for research to advance and design novel targeted therapiesThe funds will be divided equally between two new initiatives at MD Anderson: an Institute for Personalized Ca
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Five-Year-Old's Family Fighting Rare 'Orphan Disease'
Monday, August 23, 2010
BOSTON -- Imagine if your child had a potentially deadly disease so rare that only two or three babies are diagnosed with it in Massachusetts each yearThese rare, so-called "orphan diseases" affect so few people, that very little money goes towards researchIt's a reality that the Lydon family of
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Safeway Helping to Make Muscles Move
Friday, August 20, 2010
When Kim D'aoust noticed her son Gage wasn't growing properly, she was worriedAfter doctors performed blood genetic tests, Gage was diagnosed with muscular dystrophy. While it won't affect the three-year-old for about 10 years, it still worries D'aoust"Right now, it's more of an unknown what's to
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Dream Girl
Friday, August 20, 2010
Some people would probably like to forget their first week of high school, but 14-year-old Ashton Liburd wishes she could remember hers“I’m nervous. My first high school dance is [Friday],” the sophomore at North Atlanta High School in Buckhead said last week. “I couldn&rsq
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British Boy, Liam Derbyshire, Could Die if He Falls Asleep, Has Central Hypoventilation Syndrome
Friday, August 20, 2010
It's a big problem when you can't fall asleep ... especially if it's because you're afraid you're going to dieFor one 11-year-old Brit, that's life, according to London's Daily MailLiam Derbyshire has a rare condition where he stops breathing every time he falls asleepHe has what's called Centra
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USC's Malcolm Smith Tackles Rare Disorde
Friday, August 20, 2010
LOS ANGELES -- Imagine being a football player and being unable to eatImagine stopping in the middle of a meal with your teammates to vomit in a cupImagine worrying whether a disorder hardly anyone has — and even fewer people have heard of — could ruin your career before it ever gets
