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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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Fundraiser to Benefit Local Toddler With Rare Disease
Monday, September 6, 2010
Carter Rorabaugh has about as much energy as any human being should be allowedIn most ways, he is a typical 3-year-old boy who has only one gear — wide open“That’s him,” says Carter’s mother, April. “He’s like a bullet speeding around.&rdquoBut Carter, a
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Tot With Disorder Is 'the Happiest Kid'
Friday, September 3, 2010
When most people get a cold, they cough and sneeze and sniffle until it goes awayCharlie-Anne Cox can't do that. The 14-month-old's muscles are too weak to cough and the mucus drains into her lungs"Just taking a breath, that's just running a marathon for her, it sounds like at times," says her da
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St. Jude, Chili's Expand Online Giving Efforts During Seventh Annual Create-a-Pepper to Fight Childhood Cancer Campaign
Thursday, September 2, 2010
MEMPHIS, Tenn. - St. Jude Children's Research Hospital® and Chili's® Grill & Bar are tapping into the power of the digital world, making it easier than ever for guests to donate to St. Jude during the seventh annual Create-A-Pepper to Fight Childhood Cancer campaign. September is Chili
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Inaugural Fundraiser to Be Held to Stop Rare Disease
Thursday, September 2, 2010
The luminous glow of a firefly in the dark sky can be seen as a symbol of hope that blinks its way through the nightFor those affected by mitochondrial diseases, however, the firefly represents even moreMitochondria, the energy factories of cells, help fireflies light up and that same cell organ
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Fundraiser Nets $4,300 for Infant With Rare Cancer
Thursday, September 2, 2010
A total of $4,300 was raised for 9-month-old Carter Beckner at an event Saturday at the Crossroads Ruritan ClubNearly $1,900 was raised by a benefit softball tournament earlier this month. Approximately $5,900 has been donated to the child who is being treated from Neuroblastoma. The disease is a
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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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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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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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Thompson Family, Neighbors Will Conquer Peaks to Overcome Teen's Rare Genetic Disorder
Wednesday, August 25, 2010
Thompson, Conn. -- When Tom Hopkins says he would climb a mountain for his daughter, he means itThe Quinebaug man, along with two of his children and two neighbors, will climb not one, but 11, mountains this week to raise money to cure the rare disease affecting Hopkins’ 14-year-old daughter
