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INTERNATIONAL POMPE ASSOCIATION |
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About the IPA 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? |
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.
IPA/Genzyme Pompe Project Updates
About the IPA
The Rotterdam Pompe Centre
Clinical trials - an inside view
Latest News
Pompe disease groups around the world
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 UPDATESApril 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 |
