-
CheckOrphan NewsFlash, March 2,…
3/02/2010
CheckOrphan NewsFlash for Tuesday, March 2, 2010: breaking news about rare diseases, orphan diseases, orphan drugs, and…
-
CheckOrphan NewsFlash January 15,…
1/15/2010
CheckOrphan NewsFlash for Friday, January 15, 2010: breaking news about rare diseases, orphan diseases, orphan drugs,…
-
CheckOrphan NewsFlash January 11,…
1/11/2010
CheckOrphan NewsFlash for Monday, January 11, 2010: breaking news about rare diseases, orphan diseases, orphan drugs,…
NewsFlash
-
Interdisciplinary Training…
15–16 March, 2010
The goal of this meeting is to mentor the career development of a “…
-
ICORD 2010: Sixth International…
18–20 March, 2010
The VI International Conference on Rare Diseases and Orphan Drugs (ICORD…
-
Improving Musculoskeletal Outcomes…
7–9 April, 2010
The goals of this workshop are to (1) assess the state of knowledge…
-
Third NIH Workshop on Gaucher…
8–9 April, 2010
Workshop goals are to (1) determine the appropriate human, animal, or cell…
Events
Related News
Questcor and Child Neurology Foundation Announce Creation of Infantile Spasms Awareness Week
-
Developmental Delay Could Stem From Nicotinic Receptor Deletion
Wednesday, November 11, 2009
Houston -- The loss of a gene through deletion of genetic material on chromosome 15 is associated with significant abnormalities in learning and behavior, said a consortium of researchers led by Baylor College of Medicine in a report that appears online today in the journal Nature Genetics.
-
Child Neurology Foundation Announces $30,000 Grant for Research Into Cause and Treatment of Infantile Spasms
Thursday, October 29, 2009
BLOOMINGTON, Minn. -- The Child Neurology Foundation (CNF) today announced that $30,000 was raised during Infantile Spasms Awareness Week (October 11-17) that will go towards researching the cause and treatment of this ultra-rare form of epilepsy.
-
Epilepsy Drugs Could Treat Alzheimer's and Parkinson's
Wednesday, October 28, 2009
Researchers in the USA have discovered a potential new function for anti-epileptic drugs in treating neurodegenerative disorders such as Alzheimer's and Parkinson's disease. The study, published in BioMed Central's open access journal Molecular Neurodegeneration, found that neurons in the brain were protected after treatment with T-type calcium-channel blockers, which are commonly used to treat…
-
Benefit for Natalie' Will Aid Child
Thursday, October 22, 2009
A"Benefit for Natalie" will be held Oct. 24 from 3 to 7 p.m. at the Headliner in Neptune. The event will be an afternoon of fun for the entire family.Natalie is the 4-year-old daughter of a 13-year veteran of the Howell Police Department who has suffered from seizures since birth.
-
'Benefit for Natalie' Will Aid Child
Wednesday, October 14, 2009
A "Benefit for Natalie" will be held on Oct. 24 from 3-7 p.m. at the Headliner in Neptune. The event will be an afternoon of fun for the entire family.Natalie is the 4-year-old daughter of a 13- year veteran of the Howell Police Department. She has had seizures since birth.At 4 months old, Natalie was diagnosed with infantile spasms, a rare seizure disorder. This requires Natalie to…
-
Johnstown Teen Gains Support in Fight Against Rare Disease
Thursday, October 1, 2009
When Jessica Ambroe of Johnstown was diagnosed with Lafora disease in February, it allowed her family and friends to put a name to the affliction they had struggled with for more than a year.They found that the former straight-A honors student was now battling a rare and fatal neurological epilepsy that is currently afflicting fewer than a dozen people in the United States.
-
Nursing Students Raise Money for Teenager With Rare Disease
Tuesday, September 29, 2009
JOHNSTOWN, Pa. -- A group of nursing students are making a difference by helping a Johnstown girl battle a rare disease.Lafora disease is a rare form of epilepsy. Only 200 kids worldwide are diagnosed with the disease, with only 10 known cases in the United States.Jessica Ambroe was diagnosed with Lafora in February. Jessica, 15, used to be a cheerleader at Ferndale High School. Earlier this year…
-
Gene Mutation Causes Severe Epilepsy, Febrile Seizures in Thousands of Infants Worldwide
Thursday, September 17, 2009
SALT LAKE CITY — University of Utah medical researchers have identified a gene with mutations that cause febrile seizures and contribute to a severe form of epilepsy known as Dravet syndrome in some of the most vulnerable patients – infants 6 months and younger.
-
Lundbeck's Epilepsy Med Approved, J&J's Rejected
Tuesday, August 25, 2009
Shares of Lundbeck are on the rise today on the news that the FDA has approved the drugmaker's anti-epilepsy drug Sabril. The drug, which received the FDA nod as a monotherapy on Friday, is the first approved for the treatment of infantile spasms in children aged one month to two years. Infantile spasms is a rare disease that causes hundreds of spasms per day and kills as many as 20 percent of…
-
Sabril Approved by FDA to Treat Spasms in Infants and Epileptic Seizures
Monday, August 24, 2009
Sabril (vigabatrin) Oral Solution has been approved by the U.S. Food and Drug Administration to treat infantile spasms in children ages 1 month to 2 years. Sabril is the first drug in the United States approved to treat the disorder, characterized by a severe type of seizure that usually appears in the first year of life, typically between ages 4 months and 8 months. The disorder can be…
