EDITORIALS
The role of patient advocacy organizations in shaping medical research: the Pompe model
By: IPA posted on: May 27, 2019
OTHER EDITORIALS
Pompe in the News: What Happened to the Truth?
By: Tiffany House–AMDA President posted on: March 03, 2017 On February 28, 2017—Rare Disease Day—Pompe disease was once again the...
In Memoriam: Helen Walker
By: Tiffany House posted on: July 22, 2013 On November 30, 2012 the Pompe Community lost one of its most valued Advocates: Helen Walker. ...
Alternatives to Organ Donation—Editorial by a Late-Onset Pompe Patient
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...
AMDA nominates Drs. Reuser and van der Ploeg to Rare Disease Day Hall of Fame
By: Tiffany House--AMDA President posted on: March 01, 2010 The AMDA has nominated Dr. Arnold Reuser and Dr. Ans van der Ploeg to the Rare...
Editorial: Extraordinary Measures or an Extraordinary Tale? (Update)
By: Tiffany House--AMDA President posted on: February 15, 2010 What happened to the TRUTH? In the wake of the recent article by Quest...
Pompe Disease—By a Pompe Patient
By Dawn Harris Kendall posted on: December 01, 2009 Living with Pompe Elizabeth Nunnery takes her infant daughter, Zoe, to the hospital at...
Changing Lives—UTSA Sombrilla
By: Jason B. Johnson posted on: July 20, 2009 Published in University of Texas San Antonio’s Sombrilla Magazine: Summer 2009 Tiffany House...
IPA Statement: The End Of Myozyme Supply Restrictions
By: IPA posted on: May 08, 2009 Dear IPA Affiliate, You will no doubt have heard the wonderful news that Myozyme from the Belgian...
AMDA Letter to Patients Regarding Supply Situation
By: Tiffany House--AMDA President posted on: January 17, 2009 The AMDA is writing to our Pompe patient community to let everyone know that...
IPA Statement Regarding The Management Of Myozyme Supply – Adivce To Pompe Patients
By: IPA posted on: January 14, 2009 Since the first market approval of Myozyme, the IPA has liaised directly with Genzyme LSD Therapeutics...
S.A. conference to offer information on Pompe disease—San Antonio Express-News
By: Mariana Pisano posted on: November 14, 2006 (Published to web on November 14, 2006) Pompe disease, a rare, devastating and often fatal...
Editorial: Review of “The Cure” by Geeta Anand
By: Marylyn House posted on: September 19, 2006 Dear All, I admit that I was wrong in my previous analysis of “The Cure:” an analysis...
Editorial: Response to “The Cure” by Geeta Anand
By: Marylyn House posted on: September 02, 2006 (this response was written based on an expert found on Amazon.com and an article in the...
Honors grad thrives on defying the odds—San Antonio Express-News
By: A. Dorsett posted on: May 13, 2005 (Originally published May 13, 2005) By doctor’s estimates, Tiffany House shouldn’t be alive today,...
Anything for a Cure—People Magazine
By: By Richard Jerome. Macon Morehouse in San Antonio. posted on: March 21, 2005 Doctors Said Tiffany House Wouldn’t Live Past 20, but Her...
Editorial: Is Transgenic Enzyme For Pompe’s Disease Really Dead?
By: Marylyn House posted on: June 03, 2003 Recently, I read an article in The Economist Technology Quarterly, December 14, 2002, entitled...
Editorial: Response to March 2003 Article in Quest
By: Marylyn House posted on: March 28, 2003 The following correspondence is in response to the Pompe disease research article that was...
Finding normal; Teen battles rare enzyme disorder—San Antonio Express News
By: M. Pisano posted on: September 24, 2001 (originally published in San Antonio Express-News on Sept. 24, 2001) When Tiffany House was...
Acid Maltase Deficiency Association
If you are interested in learning more about Pompe Disease and would like to make a contribution in support of necessary research, please contact us at:
info@amda-pompe.org
AMDA
PO Box 700248
San Antonio, Texas 78270 USA