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

POMPE PROGRAM UPDATE MAY 22, 2009

Pompe Program Update March 2, 2009

Genzyme Receives Complete Response Letter from FDA on Lumizyme Application

MYOZYME® (2000 L) SUPPLY UPDATE _US VERSION_JANUARY 2009

GUIDANCE TO THE POMPE COMMUNITY ON THE MANAGEMENT OF MYOZYME SUPPLY

GENZYME POMPE PROGRAM UPDATE NOVEMBER 17, 2008

MYOZYME PRODUCED AT THE 2000L BIOREACTOR SCALE TO RECEIVE ACCELERATED APPROVAL

Amicus Therapeutics Begins Phase 2 Clinical Trial of AT2220 in Pompe Disease

Genzyme Provides Update on Myozyme® Manufacturing

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

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

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

JOINT LETTER FROM THE AMDA AND UPF

MYOZYME® TEMPORARY ACCESS PROGRAM (MTAP) UPDATES

MYOZYME® TEMPORARY ACCESS PROGRAM

THE MYOZYME MIRACLE

FDA APPROVES GENZYMES MYOZYME® FOR ALL PATIENTS WITH POMPE DISEASE

Expensive drug gives hope to rare disease sufferer

HOME ADAPTIONS: SHARON KRUEGER

Canadian Association of Pompe

"WEAKLING WILLIE" BOOK

FLYING WITH A VENTILATOR IN THE USA

Association for Glycogen Storage Disease

JUAN MAGDARAOG BLOG

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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