Feb 28, 2017 | EDITORIALS
On February 28, 2017—Rare Disease Day—Pompe disease was once again the subject of national media attention. During his Joint Address to Congress, President Trump brought national attention to patients suffering from rare diseases in general, and Pompe disease in...
Jul 22, 2013 | EDITORIALS
By: Tiffany House posted on: July 22, 2013 On November 30, 2012 the Pompe Community lost one of its most valued Advocates: Helen Walker. Helen was the President of the Australian Pompe Association (APA) and a Board Member of the International Pompe Association. She...
May 14, 2012 | EDITORIALS
By: –A Late-onset Pompe patient posted on: May 14, 2012 Something to think about…… A cause that is very near and dear to my heart is organ donation. I have a close relative that under went a kidney transplant a few years ago that saved his life. I have the...
Feb 15, 2010 | EDITORIALS
By: Tiffany House–AMDA President posted on: February 15, 2010 What happened to the TRUTH? In the wake of the recent article by Quest Magazine (January 2010) and the upcoming film “Extraordinary Measures” I feel that I must say something as to the accuracy of the...
Jul 20, 2009 | EDITORIALS
By: Jason B. Johnson posted on: July 20, 2009 Published in University of Texas San Antonio’s Sombrilla Magazine: Summer 2009 Tiffany House was just 11 when she was diagnosed with a rare and often fatal disease called Acid Maltase Deficiency. Doctors told her she...
Jan 17, 2009 | EDITORIALS
By: Tiffany House–AMDA President posted on: January 17, 2009 The AMDA is writing to our Pompe patient community to let everyone know that the AMDA has been working closely with the IPA and Genzyme in order to get communication out to our patient population about...
Jan 14, 2009 | EDITORIALS
By: IPA posted on: January 14, 2009 Since the first market approval of Myozyme, the IPA has liaised directly with Genzyme LSD Therapeutics to insist that an adequate inventory of the product was kept to ensure continuous supply to all patients receiving the treatment;...
