Major League Baseball to fight '4 ALS' awareness this July 4th
Tuesday June 30, 2009
New York Yankee player Lou Gehrig gave his famous farewell speech to baseball fans in a ceremony between games of a doubleheader at Yankee Stadium nearly 70 years ago. He ... Read More
Waiting For A Diagnosis
Sunday June 28, 2009
If you’re facing a possible life-changing diagnosis -- and most rare diseases fall into this category -- waiting for a diagnosis can be very stressful. Waiting for test results, waiting ... Read More
Scott Pelley of CBS '60 Minutes' voices PKU public service announcement
Tuesday June 23, 2009
Phenylketonuria (PKU) is an inherited metabolic disorder. Scott Pelley of CBS' 60 Minutes has added his voice to a public service announcement about PKU for the National PKU Alliance. You ... Read More
Klippel-Trenaunay Syndromes
Sunday June 21, 2009
Three similar blood vessel disorders are called Klippel-Trenaunay syndrome, Klippel-Trenaunay-Weber syndrome, and Sturge-Weber syndrome. All three are present at birth and cause malformations of the blood vessels and changes in ... Read More
Genzyme temporarily halts production of two rare disease drugs
Wednesday June 17, 2009
Genzyme Corporation announced on June 16 that it has decided to temporarily halt production at its Allston Landing manufacturing facility in Allston, Massachusetts. The company stated it detected a virus ... Read More
Congressional bill proposes national undiagnosed diseases registry
Tuesday June 16, 2009
On May 21, 2009, Rep. John Carter (R-TX) introduced a bill, H.R.2538, into the U.S. House of Representatives. Called the Charles August 'CAL' Long Undiagnosed Diseases Registry Act of 2009, ... Read More
June is APS Awareness Month
Sunday June 14, 2009
Antiphospholipid syndrome (APS), also known as "sticky blood," is an autoimmune disorder in which the body makes antibodies to its own blood proteins. Along with the antibodies, the body begins ... Read More
6th Annual Lemonade Days for childhood cancer
Saturday June 13, 2009
Alex's Lemonade Stand Foundation is hosting its 6th Annual Lemonade Days this weekend, June 12-14, to raise money to fight childhood cancer. The Foundation states, "During Lemonade Days, dedicated volunteers ... Read More
Ryan Dempster's daughter has DiGeorge syndrome
Tuesday June 9, 2009
FOXSports.com reports that Chicago Cubs pitching ace Ryan Dempster's infant daughter Riley, born April 1, has DiGeorge syndrome. In DiGeorge syndrome, an infant's face, neck, and chest don’t develop properly ... Read More
International Batten Disease Awareness Days June 5-7
Sunday June 7, 2009
The neuronal ceroid lipofuscinoses (NCLs) are a group of neurodegenerative disorders. Batten disease is the term applied to the juvenile form of NCL, although some physicians use the term to ... Read More
12th International Congress on Neuronal Ceroid Lipofuscinoses (NCL)
Wednesday June 3, 2009
The 12th International Congress on Neuronal Ceroid Lipofuscinoses (NCL) is being held in Hamburg, Germany, on June 3-6, 2009. According to the Congress Web site, its purpose is to facilitate ... Read More
