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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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Teen Whose Dad Suffers Dystonia Takes Up Fight Against Disease
Monday, August 30, 2010
RIVER JOHN -- A River John teenager is taking action to raise awareness of a rare neurological condition that has changed her family's life foreverAt age 15, Sara Langille has made it her mission to educate people about dystonia while fundraising to find a cure for the disease, which her father wa
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Boy, 11, Trapped in Body of a Pensioner Due to Ageing Disease Prepares for First Day of Secondary School
Friday, August 27, 2010
Like his new classmates, Harry Crowther is excited to be starting secondary school next weekBut the sprightly 11-year-old has a few extra preparations to make because he suffers from progeria - a rare genetic disease that makes him age five times faster than normalHarry, from Kirklees, West Yorks
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Battling Tot Gears Up for Milestone
Friday, August 27, 2010
A brave Leyland boy who suffers from a rare neurological disorder is gearing up for his first birthdayFrankie Forgione suffers from Krabbe Leukodystrophy, a condition which affects just one in every 100,000 peopleThe battling tot, who lives in Farington, needs 24-hour care and struggles to lift h
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Labor Day Weekend Extravaganza Fundraiser at Four Seasons Sports Complex
Friday, August 27, 2010
Preston Scibek is a seventh-grade student at Shiloh Middle SchoolHe likes baseball and swimming, and he has an immature teratoma in his right sinus cavityThe immature teratoma is a rare, aggressive form of cancer. Preston was diagnosed with this disease just before Thanksgiving in 2009. He underw
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Family Fun Day to Raise Awareness for Disorder
Friday, August 27, 2010
MARLBOROUGH -- Vicki Taylor has made it her mission to educate others about fumarase deficiency, a rare genetic metabolic disorderHer 9-year-old daughter, Katlyn, was diagnosed with it when she was just 2 years old"When she was born, we didn't know she had it," Taylor saidThere is no cure, and d
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Rare Disease Doesn't Slow Down Area Sixth-Grader
Friday, August 27, 2010
MIDDLETOWN -- Chloe Mulberry is a lively and confident girl with vivid purple nails about to start sixth-grade at the Independent Day School in MiddlefieldShe wants to become an authorAs she sits gabbing excitedly with friends one summer afternoon, you would never guess that she is sick. The only
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Two-Year-Old Survives Deadly Brain Disorder
Thursday, August 26, 2010
ASHVILLE, AL -- Babies are born everyday, and their parents pray they'll be healthyBut for some babies, life doesn't always go as plannedFor one family, a deadly diagnosis for their two-year-old turned their world upside down. But, they refused to give up“They said if we don't do anything
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Lee Makes a Big Splash on World Stage
Thursday, August 26, 2010
Whirlwind is probably not a strong enough word to describe the last eight months in the life of Harriet LeeFrom what could be described as a paddling start, Lee has whipped up a wash to take the world by storm in 2010The 19-year-old swimmer completed a remarkable year by winning gold and silver m
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Rare Form of Cancer Provides Shocking Dose of Reality for South Fayette Family
Thursday, August 26, 2010
A few months ago, Bill Faraci of South Fayette Township thought he hurt his back at work. In addition, he was out of breath a lot of the time"We couldn't figure it out," said his wife, Debbie Faraci. The shortness of breath continued so Bill went to the emergency room where the doctors ran blood t
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Garden Gang's Gift for Zak, 5
Thursday, August 26, 2010
Five year-old Zak Macefield is hoping the sun will start shining, so he can go outside and play in his garden, which has been transformed thanks to a children's charityZak's parents, Kerry and Neil, approached WellChild Charity’s Helping Hand Project, for help to make their garden at their S
