2006 AMDA/IPA Patient Conference Report
Acid
Maltase Deficiency-- A Brief Summary
AMDA's
Advisory Board
AMDA's Review of Geeta Anand's "The
Cure"
2004-2005
Initiatives for Pompe's Disease
2005
AGSD-UK Conference Report
Listing
of All Clinical Studies for Pompe's Disease--(Type in
"Pompe")
IPA
Patient Questionnaire (Still in progress)
Article
on the Results of the IPA/Erasmus Patient
Questionnaire
Second
Article on the Results of the IPA/Erasmus
Patient Questionnaire
Third
Article on the Results of the IPA/Erasmus
Patient Questionnaire
Physician's
Guide to Pompe's Disease--Free Pamphlet from NORD
AMDA's
Pompe's Disease Communication Program
AMDA's
Pompe Mentoring Program
Respiratory
Support Information
Pompe
Center of the Erasmus Medical Center Rotterdam, The
Netherlands-- (Contains mutation database)
Meet the
Patients--(Story of a Patient in the Clinical Trials)
AMDA Patient Registry
Research
Publications on Pompe's Disease (new article added)
Research
Developments
- Scientific Board Formed
- Research Highlights
- AMDA Projects
- AMDA
Patient Conferences -- 2001 and 2006
Clinical
Trials
- General
Information
- January 1999--Sophia Children's
Hospital/Erasmus University, The Netherlands
Clinical Trials
Begin--Pharming Group N.V.
- June 1999--Duke University Medical
Center-U.S.A.
Clinical Trials
Begin--Synpac Pharmaceuticals Limited
- March 2001--Genzyme/Pharming/Synpac--Joint
Venture Formed--Technology Purchased
2000-2001-Clinical
Trials--Exclusive Interview with
Genzyme
May 2001--Novazyme
Pharmaceutical, Inc., U.S.A.
Clinical
Trials Planned--Exclusive Interview with
Novazyme
August 2001--Article
on Transgenic Enzyme Replacement Therapy
August 2001--Genzyme/Novazyme
Merger
October 2001-- Genzyme
Acquires Pharming Manufacturing Facility
April 2002-- Genzyme
Press Release
July 2002--Genzyme
Begins Phase Out of Enzyme Produced in Milk of
Transgenic Rabbits
March 2003-- AMDA's
Response to Article in MDA's "Quest"
March 2003--
Genzyme
Enrolling Patients in New Clinical Trial (Study
1702)
May 2003--
Genzyme
Enrolling Patients in New Clinical Trial (Study
1602)
January 2004 --AMDA
Newsletter Detailing Genzyme Initiatives in 2004
April 2004 -- Suspension
of Late-Onset Expanded Access Program
August 2004 -- Joint
IPA/Genzyme Statement announcing the new status
of the Expanded Access Programs
December 2004 -- December
2004 Update of Genzyme's Pompe Project
December 2004 -- Genzyme
Files for European Approval of Myozyme for
Treatment of Pompe Disease
March 2005 -- March
2005 Update of Genzyme's Pompe Project
April 2005 -- Genzyme
Reports Interim Results from Pivotal Study of
Myozyme
July 2005 -- July
2005 Update of Genzyme's Pompe Project
July 2005
-- Genzyme Files for FDA Approval
of Myozyme for
Treatment of Pompe Disease
September
2005 -- September 2005 Update of
Genzyme's Pompe Program
January 2006 -- Genzyme
Provides Update on U.S. Marketing Application for
Myozyme
April
2006 -- European
Commission Approves Genzyme's Myozyme
April
2006 -- FDA Approves Genzyme's Myozyme
June 2006 -- Myozyme's
Label available for patients to review
IPA--International
Pompe Association
IPA
News
First
IPA Conference--July 1999
IPA
Board Meeting--February 2002
Letter
from IPA Chairman--February 2002
Letter
from Vice President of Genzyme--March 9, 2002
IPA/Genzyme
Meeting--April 16-17, 2002
IPA/Genzyme
News--September 24, 2002
IPA
Patient Questionnaire--November
2002 (Still in Progress)
IPA/Genzyme
News--December 2002
IPA
Conference --October 30-November 1, 2003
Summary
of 2004 International Pompe Association
Conference
The
IPA has developed a Pompe Connections
Brochure--October 2005
Summary
of the 2005 AFM-IPA Conference available
Letter
from IPA and Genzyme concerning LOTS
Memorials
Other
Webs of Interest
AMDA
Guest Book
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