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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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Dravet: Three Families Unite to Take on Rare Syndrome
Wednesday, August 18, 2010
Caeden Shaughnessy’s life changed with a violent shakeAt 9 months old, he collapsed into a 45-minute seizure, and paramedics rushed him to the emergency room“They had a really hard time controlling it,” his father saidDoctors called it a common febrile seizure and said the fami
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Ella's Brave Battle Is Set to Hit TV Screens
Wednesday, August 18, 2010
A brave tot who had both kidneys removed because of a rare illness is set to become a TV starThe largest children's hospital in the UK, the Royal Manchester Children's Hospital, has opened its doors to television cameras for a new ITV1 show Children's HospitalAnd the producers, Maverick TV, want
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Fundraiser to Help Fight Rare Disease
Tuesday, August 17, 2010
Five years ago our third child, Eva Nichole, was born with many health and developmental problemsShe had one kidney, heart problems, facial paralysis, feeding issues, delayed growth, and was deaf and blind. We learned Eva has CHARGE syndromeCHARGE syndrome is a recognizable (genetic) pattern of b
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Golf Outing to Benefit Toddler
Tuesday, August 17, 2010
Manassas Park, Va. -- A "Tee Off for Tyler" fundraiser day is planned for Tyler Philopena on ThursdayThe event will begin at noon with a golf outing at Generals Ridge Golf Course in Manassas Park for $125 that includes golf and dinnerOnly dinner is $50 and it will be at 6 p.m. at Clarke's Grill &
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Little-Known Disease Ails Boy, Mom, Grandmother
Tuesday, August 17, 2010
Polycystic Kidney Disease might not get the media attention that other medical conditions do, but it's still serious business for those who struggle with this genetic disorderGenerally shortened to just PKD, this disease is characterized by multiple, fluid-filled cysts that form on the kidneys tha
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Kristin Paulson Is One of a Kind
Tuesday, August 17, 2010
MANKATO -- Kristin Paulson is pretty and sweetShe’s also modest and optimistic. She was a dancer. She was homecoming queen at Mankato East High School last fall. She graduated in the spring, and she’ll be a freshman at Minnesota State University this fallOn the surface, she has everyt
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Mount Laurel Girl Overcomes Gaucher Disease to Excel as Cheerleader
Tuesday, August 17, 2010
Lyric Generals twirls and whirls through a toe-touch back tuck faster, and far more gracefully, than I can twist my tongue around the phraseBut the speed of her stunt isn't what stuns me. It's that this 12-year-old Mount Laurel cheerleader can do it at allBefore she was diagnosed at age 5 with Ga
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Rare Illness Turns Life Upside Down for Calne Woman
Monday, August 16, 2010
Former project manager Bridie Nelson has spoken about life with a little known skin disorder, which left her in constant pain for almost two yearsThe 48-year-old from Newbury Avenue, Calne, was diagnosed in July 2006 with lichen planus, an itchy, non-infectious rash that can appear anywhere on the
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Determined Star to Play for England
Monday, August 16, 2010
As he pulls on his England shirt for the fifth time, Dan English seems just a normal teenager living out his childhood dreamsSince he was nine years old, however, Dan has battled hard after losing his sight in both eyesNow the youngster is set to represent his country at international level, as h
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Bridgewater Twins' Friends, Family Head to Falmouth to Raise Money for Medical Expenses
Monday, August 16, 2010
BRIDGEWATER -- Nine-year-old twins Alexia and Kailyn DeBoe, for the most part, have normal 9-year-old lives filled with dancing, cheerleading, the music of Justin Bieber and the junior soap-opera drama of “Twilight.&rdquo“Aside from the trip to Children’s (Hospital) every four we
