United Pompe Foundation

Patient Registry

A patient registry has been established by the United Pompe Foundation in order to obtain a database for individual affected by the disease. United Pompe Foundation is not associated with any medical group or organization.

NO INFORMATION FROM THIS DATABASE WILL BE RELEASED WITHOUT PRIOR CONSENT OF
THE PATIENT OR LEGAL GUARDIAN OF THE PATIENT.

Patient Information:

Patient Name:
Last Name:
Male/Female:
Name of Parents/Gaurdian:
Address:
City:
State:
Zip:
Country:
Phone:
Email:
Date of Birth:
Age:
Age of Onset of Disease:
Age Diagnosed:
Ethnic Background:
Diagnosing Physician:
Date of Diagnosis:
Where Diagnosed:

Upcoming Events/New Items

Links

US Myozyme Manufacturing Update - April 2008

Genzyme Provides Update on Myozyme® Manufacturing

Amicus Therapeutics Presents Data from Clinical Ex Vivo Response Study and Phase 1 Studies of AT2220

January 2008 US Myozyme Supply Update

Genzyme Study of Myozyme® for Late-Onset Pompe Patients Meets Co-Primary Efficacy Endpoints

Amicus Therapeutics and Shire plc Enter Into $440 Million ex-US Licensing Agreement to Develop and Commercialize Amigal(TM), Plicera(TM) and At2220

Amicus Therapeutics Announces Positive Results From Two Phase 1 Clinical Studies of AT2220 for Pompe Disease

OCTOBER UPDATE ON US MYOZYME®SUPPLY

REHABILITATION MANAGEMENT OF POMPE DISEASE: GREGORY T. CARTER, MD, MS

JOINT LETTER FROM THE AMDA AND UPF

MYOZYME® TEMPORARY ACCESS PROGRAM (MTAP) UPDATES

WSJ LETTER TO THE EDITOR

US MYOZYME® SUPPLY UPDATE JULY 25, 2007

MTAP FACT SHEET JULY 2007

GENZYME POMPE PROGRAM UPDATE JUNE 2007

MTAP FACT SHEET JUNE 2007

POMPE PROGRAM UPDATE MAY 2007

MYOZYME® TEMPORARY ACCESS PROGRAM

ILLINOIS NEWBORN SCREENING/SENATE BILL 1566

GENZYME POMPE PROGRAM UPDATE APRIL 2007

GENZYME UPDATE ON THE LOTS TRIAL- JANUARY 2007

AMICUS THERAPEUTICS COMMENCES PHASE 1 CLINICAL TRIALS FOR AT2220 FOR POMPE DISEASE

THE MYOZYME MIRACLE

FDA APPROVES GENZYMES MYOZYME® FOR ALL PATIENTS WITH POMPE DISEASE

Expensive drug gives hope to rare disease sufferer

ANGEL FLIGHT NORTHEAST GROUP

ANGEL FLIGHT AIR TRANSPORT

FLYING WITH A VENTILATOR IN THE USA

Association for Glycogen Storage Disease

JUAN MAGDARAOG BLOG

Canadian Association of Pompe

Myozyme Home Page

EXPRESSION OF HOPE

Amicus Therapeutics

Helping Hands Loving Hearts

International Pompe Association IPA

Clinical Trial Information

Genzyme's Pompe Website

Pompe Disease | Clinical Trial Process | Donations | EP Magazine Article "Living With Pompe Disease"

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