Here is the news fom 2009 Fabry disease news reports ...
Nixon requires newborns be
tested for 5 diseases
MLive.com - MI,USA (AP) — JEFFERSON CITY, Mo.
Missouri will become one of a few states to test newborns for several kinds of rare and often fatal genetic disorders under a new law signed Wednesday. Gov. Jay Nixon signed into law a measure that adds five lysosomal storage disorders to the 67 other diseases for which infants already are screened. By July 2012, state tests will include checks for Krabbe, Pompe, Gaucher, Niemann-Pick and Fabry. The legislation is named for Brady Cunningham, a southeast Missouri boy who died in April from Krabbe disease. Earlier this year, Jessy and Dustin Cunningham brought their son to the Capitol from their Campbell home to urge lawmakers to approve the bill.
News Category: Fabry disease news & information
Enzyme Replacement Therapy Gives Significant Benefits for Women with Fabry Disease
18 June 2009,
MTB Europe Technology for Healthcare
Shire Human Genetic Therapies (HGT), a business unit of Shire plc, has announced that results from an observational study published in the June 2009 print issue of Genetics in Medicine demonstrate that enzyme replacement therapy (ERT) with REPLAGAL 0.2mg/kg is effective in treating some of the signs and symptoms of Fabry disease in women.
more...
News Category: Fabry disease news & information
Genzyme Plight Makes Patients Uneasy
The Boston Globe (Boston.com)
By
Erin Ailworth and Megan Woolhouse
Globe Staff
/ June 18, 2009
The drug, Cerezyme, combats Hannah’s severe form of Gaucher disease, a rare genetic disorder that caused her liver and spleen to swell. After just a few months of intravenous treatments, she was able to roll on her belly and play for the first time, but without the drug she is unlikely to live into adulthood.
more...
News Category: Fabry disease news & information
Push For Healthcare Reform Online
KSFY - Sioux Falls,SD,USA
June 19, 2009
Sioux Falls, South Dakota
She suffers from a very rare disease, but she has a pretty common hope for reform. Before Carol Rosenbrook was diagnosed with Fabry's disease five years ago ...
more...
News Category: Fabry disease news & information
Newborn screening bill advances through general assembly
Daily Dunklin Democrat - Kennett,Missouri,USA
Sunday, May 10, 2009
George Anderson
"The proposed legislation would add the potentially fatal metabolic disorders of Krabbe, Pompe, Gaucher, Neimann-Pick and Fabry disease to the list of 29
... more...
News Category: Fabry disease news & information
New born screening set to be expanded
KRCG - Jefferson City,MO,USA
Friday, May 08, 2009 at 10:46 p.m.
... boy who died last month from Krabbe Disease, which affects the nervous system. ... be Krabbe and four others., Pompe, Gaucher, Niemann-Pick, and Fabry.
...
more...
News Category: Fabry disease news & information
Mo. Votes to Add Five Diseases to Newborn Screenings
WIBW - Topeka,KS,USA
Posted: 3:29 PM May 8, 2009
... died last month from Krabbe
disease, which affects the nervous system.
... Added to that list would be Krabbe, Pompe , Gaucher, Niemann-Pic, and
Fabry.
...
more...
News Category: Fabry disease news & information
Enzyme therapy slows kidney function decline
EurekAlert (press release) - Washington,DC,USA
Public release date: 8-Apr-2009
For men with Fabry disease, enzyme replacement therapy (ERT) with agalsidase alfa slows deterioration of kidney function, reports a study in the online ... more...
News Category: Fabry disease news & information
Mo. Votes to Add Five Diseases to Newborn Screenings
WIBW - Topeka,KS,USA
Posted: 3:29 PM May 8, 2009
... died last month from Krabbe
disease, which affects the nervous system.
... Added to that list would be Krabbe, Pompe , Gaucher, Niemann-Pic, and
Fabry.
...
more...
News Category: Fabry disease news & information
Enzyme therapy slows kidney function decline
EurekAlert (press release) - Washington,DC,USA
Public release date: 8-Apr-2009
For men with Fabry disease, enzyme replacement therapy (ERT) with agalsidase alfa slows deterioration of kidney function, reports a study in the online ... more...
News Category: Fabry disease news & information
Push For Healthcare Reform Online
KSFY - Sioux Falls,SD,USA
June 19, 2009
Sioux Falls, South Dakota
She suffers from a very rare disease, but she has a pretty common hope for reform. Before Carol Rosenbrook was diagnosed with Fabry's disease five years ago ...
more...
News Category: Fabry disease news & information
Newborn screening bill advances through general assembly
Daily Dunklin Democrat - Kennett,Missouri,USA
Sunday, May 10, 2009
George Anderson
"The proposed legislation would add the potentially fatal metabolic disorders of Krabbe, Pompe, Gaucher, Neimann-Pick and Fabry disease to the list of 29
... more...
News Category: Fabry disease news & information
New born screening set to be expanded
KRCG - Jefferson City,MO,USA
Friday, May 08, 2009 at 10:46 p.m.
... boy who died last month from Krabbe Disease, which affects the nervous system. ... be Krabbe and four others., Pompe, Gaucher, Niemann-Pick, and Fabry.
...
more...
News Category: Fabry disease news & information
Mo. Votes to Add Five Diseases to Newborn Screenings
WIBW - Topeka,KS,USA
Posted: 3:29 PM May 8, 2009
... died last month from Krabbe
disease, which affects the nervous system.
... Added to that list would be Krabbe, Pompe , Gaucher, Niemann-Pic, and
Fabry.
...
more...
News Category: Fabry disease news & information
Enzyme therapy slows kidney function decline
EurekAlert (press release) - Washington,DC,USA
Public release date: 8-Apr-2009
For men with Fabry disease, enzyme replacement therapy (ERT) with agalsidase alfa slows deterioration of kidney function, reports a study in the online ... more...
News Category: Fabry disease news & information
Mo. Votes to Add Five Diseases to Newborn Screenings
WIBW - Topeka,KS,USA
Posted: 3:29 PM May 8, 2009
... died last month from Krabbe
disease, which affects the nervous system.
... Added to that list would be Krabbe, Pompe , Gaucher, Niemann-Pic, and
Fabry.
...
more...
News Category: Fabry disease news & information
Enzyme therapy slows kidney function decline
EurekAlert (press release) - Washington,DC,USA
Public release date: 8-Apr-2009
For men with Fabry disease, enzyme replacement therapy (ERT) with agalsidase alfa slows deterioration of kidney function, reports a study in the online ... more...
News Category: Fabry disease news & information
