Welcome

 

The United Pompe Foundation was formed to assist patients and/or their families with medical costs and other expenses that these patients and families face and may not be able to cover, or fully cover, through their insurance.


Another very important issue we all face is raising the public awareness of Pompe disease. As we are all aware there is very little public awareness of this devastating disease. The committee is comprised of Pompe patients and parents of Pompe patients so that we have a good understanding of the many problems those families must deal with on a daily basis. We hope to be a valuable resource that patients can turn to if they need help. If you have any questions, comments, or would like to help please contact us.

If you would like to make a donation in memory of Alicia

Alicia

Please click Here

 

If you would like to make a donation to the
Alicia Blackington Wagle Scholarship Fund
Amber Cowan (1982-2009)

Alicia

Please click Here

 

 

JAYDEN TERRENCE JOHNSON

Jaden

Jayden would have been 11 years old on April 10, 2014. He is one of oldest and longest treated Infantile Pompe patients in the world.Learn More

 

   
 
 
Upcoming Events/New Items  Links

“Evidera is recruiting adults with late-onset Pompe disease for an Interview Study”

BioMarin is currently seeking patients for a Phase 3 clinical trial in Late Onset Pompe Disease

DUKE INFANTILE ONSET POMPE PATIENT MEETING 2014

Pompe Perspectives Videos

Amicus Therapeutics Strengthens Biologics Business Strategy

MIRACLE IN MOTION

Amicus Therapeutics Announces Positive Pompe Program Updates

MEDIC ALERT PROGRAM FOR POMPE PATIENTS

March 19, 2012 Community Update for Pompe Families in the United States who Utilize Myozyme® (alglucosidase alfa) Produced at the 160 L Manufacturing Scale

Community Update for Pompe Families in the United States who Utilize Myozyme®

ADVANCE Study Fact Sheet

Amicus Therapeutics Announces First Patient in Phase 2 Study for Pompe Disease

AMICUS POMPE COMMUNITY UPDATE NEWSLETTER

Amicus Therapeutics Announces FDA Agreement to Commence Phase 2 Study of AT2220 Co-administered with Enzyme Replacement Therapy for Pompe Disease

Sanofi-aventis to Acquire Genzyme

BioMarin Initiates Phase 1/2 Trial for BMN 701 for the Treatment of Pompe Disease

POMPE IN COMMON WINTER 2010 EDITION

GENZYME: THE MAKING OF PROTEIN THERAPIES VIDEO

United States Pompe Program Update, August 9, 2010

UNITED STATES POMPE PROGRAM UPDATE, MAY 25, 2010

GENZYME RECEIVES FDA APPROVAL FOR LUMIZYME FOR POMPE DISEASE

US Pompe Program Update – December 3, 2009

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

THE MYOZYME MIRACLE

FDA APPROVES GENZYMES MYOZYME® FOR ALL PATIENTS WITH POMPE DISEASE

Expensive drug gives hope to rare disease sufferer

 

MEDIC ALERT BROCHURE

MEDIC ALERT PROGRAM FOR POMPE PATIENTS

POMPE INCOMMON

New Zealand Pompe Network website

LUMIZYME HOME PAGE

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

UK Pompe Group

Helping Hands Loving Hearts

International Pompe Association IPA

Clinical Trial Information

Genzyme's Pompe Website


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