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INTERNATIONAL POMPE ASSOCIATION

 

About the IPA

IPA Board

Latest News

Patient Oriented Publications

Research Publications  

Patient Testimonials  

Pompe Connections brochure (available in German, English, Spanish, Dutch, Turkish, French, Japanese, and Italian)

Pompe Connections Treatment Edition (available in Dutch, English, French,  German, Italian, Japanese, Spanish, and Turkish) (new)

Pompe Questionnaire

What is it like to take part in a clinical trial?

Upcoming Events

Contacts

Start a new group

Links

International Funds for Children in Need

Welcome to the home page of the International Pompe Association (IPA).

The IPA is a federation of Pompe disease patient's groups world-wide. It seeks to coordinate activities and share experience and knowledge between different groups, amongst other objectives.

It is not an individual membership organization .

Membership is open to groups and country contacts only. If there is no group covering your country, then why don't you start one? If you would like to do this - or perhaps just act as a contact point for families in your country, then contact the IPA Secretariat.


The IPA Conference Page

Information on past IPA Conferences.

IPA/Genzyme Pompe Project Updates

This is where to go to monitor progress of the enzyme replacement therapy project.

About the IPA

This is where you'll get information about the organisation and its activities.

The Rotterdam Pompe Centre

The Centre are our partners in the Pompe Questionaire and data registry. If you are a Pompe patient who has not yet filled in a questionaire, please do so now and play your part in helping beat this disease.

Clinical trials - an inside view

While we wait for extended clinical trials and eventual marketing of enzyme replacement therapy, here are some people's experiences of taking part in an ERT trial

Latest News

Most recently updated 25 January 2007

Pompe disease groups around the world

Make contact with the group/contact person for your country

Contact the IPA.


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A few points to note. Anything without a name attached was probably written by Kevin O'Donnell. Nothing on this site is intended to replace the advice of your doctor. There is no advertising on this site - though we're open to offers. If there ever is, it will be clearly designated as such. This site is hosted courtesy of the AMDA of the United States, a registered charity. Privacy: all emails sent to the worldpompe.org address will be treated as in confidence. We will not forward your email address on to anyone without your permission. This page most recently updated 22 April 2008 by Tiffany House

LATEST UPDATES

April 2008 Pompe Program Update -- 22 April 2008 (new)

Important Update on Myozyme Manufacturing Situation--21 April 2008 (new)

Findings from an International Pompe Patient Survey are now available. See article by Marloes Hagemans, Ph.D. -- 05 February 2008  

The Japanese Translation of the Pompe Connections Treatment Edition is now available -- 05 February 2008

Important Myozyme Supply Information in January Pompe Program Update from Genzyme -- 15 January 2008

Genzyme announced that LOTS met both primary endpoints--13 December 2007

New Testimonials have been added to that Patient Testimonials -- 13 December 2007  

Myozyme Supply Update from Genzyme--03 October 2007  

Updates have been added to the Patient Testimonials -- 03 October 2007  

Interview with Dr, Ans van der Ploeg on Enzyme Replacement Therapy for Pompe disease -- 06 Sept. 2007

July US Myozyme Supply Update  -- 25 July 2007

July 2007 MTAP Fact Sheet  -- 25 July 2007  

AMDA Response to Myozyme Supply Problems -- 25 July 2007

A Spanish Translation of the Pompe Connections Treatment Edition Brochure is now available--11 July 2007

An Italian  Translation of the Pompe Connections Treatment Edition Brochure is now available--11 July 2007

An Update on the Myozyme Temporary Access Program (MTAP) has been provided by Genzyme -- 28 June 2007  

June 2007 Pompe Program Update from Genzyme is now available -- 28 June 2007 

May 2007 Pompe Program Update from Genzyme now available -- 25 May 2007

More Information concerning Genzyme's MTAP program is now available --03 May 2007

April Pompe Program Update from Genzyme -- 25 April 2007

An Italian  Translation of the Pompe Connections Brochure is available--15 April 2007

A Turkish Translation of the Pompe Connections Treatment Edition is now available--15 April 2007

A Japanese Translation of the Pompe Connections is now available -- 05 March 2007

A German Translation of the Pompe Connections Treatmen Edition is now available -- 08 Feb. 2007

A Dutch Translation of the Pompe Connections Treatment Edition is now available -- 02 Feb. 2007

A French Translation of the Pompe Connections Treatment Edition is now available -- 25 Jan 2007

Genzyme has provide the IPA with an update on the LOTS program -- 25 Jan 2007

Updates to several Patient Testimonials have been added -- 21 Jan 2007

The IPA is pleased to publish its Annual Review -- 16 Jan 2007

A Pompe Organization in Mexico has been added to our list of member organizations -- 07 Jan 2007

Summary of the AMDA/IPA Patient Conference is now availble through the AMDA website -- 14 Dec. 2006

Article Concerning Myozyme on CenterWatch (a Clinical Trials Listing Service) -- 12 Dec. 2006

Two new articles have been added to the Research Publications page. These articles focus on physical therapy and treatment guidelines for Pompe -- 12 Dec. 2006

A Treatment Edition of the Pompe Connections Brochure concerning ERT and related issues is now available -- 22 Nov. 2006

French Translation of IPA's Pompe Connections booklet is now available -- 04 Oct. 2006

Spanish Translation of IPA's Pompe Connections booklet is now available -- 03 Sept. 2006

European Public Assesment report of Myozyme® is available online -- 17 Aug 2006

Genzyme Pamphlet on Needle Fear is now available for patients -- 03 Aug. 2006

The drug label for Myozyme® is now available for patients to review. It includes the possible side effects of the treatment -- 09 June 2006

Letter from IPA and Genzyme concerning LOTS -- 09 June 2006

MYOZYME® APPROVED IN THE U.S -- 03 May 2006

MYOZYME® APPROVED IN EUROPE -- 03 April 2006

Report on ENMC Pompe Workshop now available  

Late-onset screening study information is now available on the clinicaltrials.gov website. -- 08 June 2005

Information on the Pompe Registry can be found at pomperegistry.com