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Time is running out for children with rare disorder Experimental ...  -  Feb 28, 2008
Statesman Journal,..."One of the rarest of the rares," said Cate Walsh Vockley of the National Niemann-Pick Disease Foundation. A family with strong local ties found out the

Former Globetrotters put on show in Salem  -  Mar 6, 2008
Salem Statesman Journal,...profits will go to the foundation by way of the Hadley Hope Fund, which is named for a Southern Oregon family who is affected by Niemann-Pick disease.

Parents ‘appalled’ at quality of son’s care  -  Mar 1, 2008
Huddersfield Examiner,Moazam has a rare genetic disorder called Niemann-Pick disease. From the moment he wakes until the time he goes to sleep he needs care and attention.

Chemical Chaperone Could Open Door To Treatment Of Neurological ...  -  Feb 5, 2008
Science Daily (press release)To overcome the genetic defect in Niemann-Pick disease, the researchers suggest that chemical compounds could potentially "chaperone" mutant protein

Chemical chaperones may treat defect  -  Feb 4, 2008
United Press International5 (UPI) -- A new US study suggests chemical compounds could chaperone mutant proteins to overcome the genetic defect in Niemann-Pick disease.

Cousin Marriages and Congenital Defects  -  Feb 13, 2008
American Muslim,...accounting for the almost unique occurrence of many lethal childhood diseases such as Tay-Sachs and Niemann Pick Disease, as well as the greatly

Making cents for a cure  -  Dec 4, 2007
Eufaula Tribune,The foundation, which is dedicated to finding a cure for Niemann-Pick disease, receives a percentage of each sale-ranging from .5 percent to 20 percent -as

Tributes to ‘happy and well-respected’ Carl  -  Dec 20, 2007
Dorset Echo,...before he was a year old and at 15 was diagnosed with Niemann Pick disease, an incurable genetic condition affecting the liver and other organs.

Parents talk to the Echo about the loss of their son in a road tragedy  -  Dec 18, 2007
this is hampshire.net,Born with the same liver disorder that had killed his sister four years earlier, Carl was 15 when he was diagnosed with Niemann Pick disease, an incurable

mitchell harrower fights niemann-pick disease type c  -  Nov 9, 2007
Melbourne Herald Sun,...people in the world diagnosed with the devastating niemann-pick disease type c -- often referred to as childhood alzheimer's because sufferers gradually

zavesca may lose doh funding  -  Nov 4, 2007
Taipei Times,...the drug marketed as zavesca, is effective in treating niemann-pick disease, a rare inherited disorder with no cure. the disease is fatal and usually

devastating diagnosis  -  Nov 12, 2007
St. John's Telegram,22. children with type a niemann-pick disease often die before age two. niemann-pick is a rare, enzyme-deficiency disease that affects metabolism. it causes

doh to hold meeting on drug funding  -  Nov 7, 2007
China Post,...to treat patients suffering from niemann-pick disease -- drew broadsides. noting that the bureau began the experimental subsidy project last november,

magic help for leah, 6  -  Nov 1, 2007
Blackpool Gazette,...hope to take the youngster and her close family on the holiday of a lifetime before the condition, niemann pick disease type c, advances too far for her

Questions and Answers on Recommendation for the Refusal of a ...  -  19 Oct 2007
PharmaLive.com (press release),Zavesca was designated as an orphan medicinal product on 16 February 2006 for Niemann Pick disease, type C. Miglustat, the active substance in Zavesca,

Actelion's Zavesca receives negative opinion for new indication ...  -  19 Oct 2007
Forbes,Actelion had filed for additional Zavesca approval for the treatment of a rare genetic disease called Niemann Pick-Disease Typ C. The Swiss pharma group

Soccer goals raise funds  -  Oct 11, 2007
Connecticut Post,SHELTON — Take a shot on goal and score a victory in the fight to find a cure for Niemann-Pick Disease, a rare childhood genetic condition that slowly

Golfers swing the sticks to support Urbana sports fan  -  Sep 20, 2007
Business Gazette,Papier, a 5-year-old kindergartner, was diagnosed with Niemann-Pick Disease, Type C, a rare childhood genetic condition that slowly degrades the nervous

Rare disease claims little Lucy  -  Oct 3, 2007
Sunderland Echo,The four-year-old had been fighting the rare Niemann-Pick Disease Type C since she was just five weeks old. Her parents Toni, 38, and Stewart, 37,

NIH National Neurology Advisory Council Gains Five New Members  -  Oct 16, 2007
Media Newswire (press release),...a volunteer, nonprofit organization that funds research on the fatal genetic disorder known as Niemann-Pick Disease Type C and related neurodegenerative

One-Year results on the use of miglustat (Zavesca®) in Niemann ...  -  Aug 24, 2007
Newsdesk,...[3] Zervas M, Somers KL, Thrall MA, Walkley SU (2001) Critical role for glycosphingolipids in Niemann-Pick disease type C. Curr Biol 11:1283-1287.

Fight SMA Creates Directory of Diseases Benefiting From Spinal ...  -  Aug 29, 2007
FinanceVisor.com (press release),...well-known disorders such as Parkinson's and Alzheimers, as well as those that are lesser known, such as Goucher Disease and Niemann-Pick Disease.

College Football weekly notes  -  Aug 20, 2007
The Phanatic,National Spokesman for the Ara Parseghian Medical Research Foundation, a non- profit organization dedicated to finding a cure for Niemann-Pick disease.

Fight SMA Creates Directory of Diseases Benefiting From Spinal ...  -  Aug 9, 2007
PR Web (press release),...well-known disorders such as Parkinson's and Alzheimers, as well as those that are lesser known, such as Goucher Disease and Niemann-Pick Disease.

Twin Brook Winery to host benefit 'Cruise-in'  -  Jul 5, 2007
Lancaster Newspapers,All proceeds benefit the National Niemann-Pick Disease Foundation and the Ara Parseghian Medical Research Foundation. Sometimes fatal, Niemann-Pick disease

'Make the most of every day'  -  Jul 4, 2007
Hattiesburg American,As the only child in the state of Mississippi and one of just 500 people worldwide with Niemann-Pick Disease Type C - a rare, degenerative and always fatal

Erin’s race picks up pace  -  Jun 20, 2007
Hanover Mariner,Erin Roberts lost her battle to Niemann-Pick Disease, a rare disease, in December of 2004 at the age of 24. By Tessa Fitzgerald Holly Roberts will always

Partners energize Walk Fest  -  Jun 19, 2007
Watertown Daily Times,It has done this by supporting Children's Hospital of Milwaukee, Fort HealthCare, National Niemann-Pick Disease Foundation, Rainbow Hospice Care,

Walk Fest will be this weekend in Jefferson  -  Jun 14, 2007
Watertown Daily Times,National Niemann-Pick Disease Foundation, Rainbow Hospice Care, UW Paul P. Carbone Comprehensive Cancer Center and Watertown Area Health Services.

Sharing the 'faith to overcome'  -  Jun 11, 2007
Brunswick Times Record,Fitzherbert died in 2003 at the age of 14 from complications of Niemann-Pick disease. Bailey died in a car crash in 2005 at the age of 16.

[an error occurred while processing this directive] Tay-Sachs testing urged for Ashkenazi couples  -  28 Feb 2007
Canadian Jewish News,Canavan disease, familial dysautonomia, Fanconi anemia group C, mucolipidosis type IV, Niemann Pick disease types A and B and Tay-Sachs.

Cursed by fate. Bathed in love  -  Feb 1, 2007
Melbourne Herald Sun,He is one of only about 500 people in the world diagnosed with Niemann-Pick disease type C, often referred to as childhood Alzheimer's because children with

Genzyme Reports Financial Results for Fourth Quarter of 2006 and ...  -  Feb 14, 2007
MSN MoneyEnrollment has begun in a Phase 1 clinical trial of a potential enzyme replacement therapy for the treatment of ASM-deficient Niemann Pick disease.

The Genomic Era and Serious Mental Illness: A Potential ...  -  Feb 7, 2007
Psychiatric Services (subscription)Shulman LM, David NJ, Weiner WJ: Psychosis as the initial manifestation of adult-onset Niemann-Pick disease type C. Neurology 45:1739-1743,1995[Abstract]

Spaghetti dinner today to benefit Hamlin tot  -  Jan 20, 2007
Rochester Democrat and Chronicle,The dinner will help defray medical costs for 18-month-old Vinny Vandetta, who was diagnosed in November with Niemann-Pick Disease Type A, a disorder in

College students flock to screening for Jewish genetic diseases  -  Dec 5, 2006
Pittsburgh Post Gazette,Several of the disorders, including Tay-Sachs disease, Niemann-Pick disease type A, and Canavan disease, can be fatal within the early years of life. ...

Hillel, tested for  -  Dec 7, 2006
Pittsburgh Jewish Chronicle,...for Bloom syndrome, Canavan disease, Cystic Fibrosis, Familial Dysautonomia, Fanconi anemia, Gaucher disease, Mucolipidosis IV, Niemann-Pick disease-Type A ...

College students flock to screening for Jewish genetic diseases  -  Dec 5, 2006
Pittsburgh Post Gazette,Several of the disorders, including Tay-Sachs disease, Niemann-Pick disease type A, and Canavan disease, can be fatal within the early years of life. ...

Hillel, tested for  -  Dec 7, 2006
Pittsburgh Jewish Chronicle,...for Bloom syndrome, Canavan disease, Cystic Fibrosis, Familial Dysautonomia, Fanconi anemia, Gaucher disease, Mucolipidosis IV, Niemann-Pick disease-Type A ...

Health Watch  -  Nov 20, 2006
Organiser,MPS-IV), Mucolipidosis II (I-Cell Disease), Multiple Myeloma, Myelofibrosis Myeloid Metaplasia, Neutrophil Actin deficiency, Niemann-Pick Disease, Non-Hodgkin ...

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