International Pompe Association

About us

Patient Support Group Collaboration with Industry

In the support of patients and their families living with rare diseases, the work of patient groups is vital for the collection of information and establishing network links between patients, medical experts, and industry...

Download the IPA Position Paper "Patient Support Group Collaboration with Industry" (PDF)

 

Orphan Drug Safety and Supply

Predicting the demand for an orphan drug is fraught with difficulty; the prevalence figures of patients are very unreliable and ethnically heterogeneous, and the willingness of health providers to reimburse such expensive therapies is often inconsistent...

Download the IPA Position Paper "Orphan Drug Safety and Supply" (PDF)

 

Patient Access to Approved Therapies

An Enzyme Replacement Therapy (ERT) for Pompe disease developed by the Genzyme Corporation, and several others are currently under development. For the commercial ERT, approval has been given by many nations and is reimbursed by health providers within those nations. However, we are aware that some nations have not approved this therapy and obstacles to reimbursement exist even within nations that have approved the therapy...

Download the IPA Position Paper "Patient Access to Approved Therapies" (PDF)

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Chairman's Report 2013
for the year 2012
Published July 2013
Download 2013 Chairman's Report (PDF, 49 kB)

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Chairman's Report 2010
for the year ending December 31st 2010
Published January 2011
Download 2010 Chairman's Report (PDF, 157 kB)

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Chairman's Report 2009
for the year ending December 31st 2009
Published January 2010
Download 2009 Chairman's Report (PDF, 87 kB)

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Chairman's Report 2008
for the year ending December 31st 2008
Published January 2009
Download 2008 Chairman's Report (PDF, 64 kB)

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“A Positive Outlook” (2008)
Annual Review for the year ending December 31st 2007
Published January 2008
Download 2008 Annual Review (PDF, 618 kB)

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“The Hope and Freedom of Life” (2007)
Annual Review for the year ending December 31st 2006
Published January 2007
Download 2007 Annual Review (PDF, 437 kB)

2011

October 7-9, 2011 in San Antonio, Texas
(AMDA/IPA Patient and Scientific Conference)

2006

November 17-19, 2006 in San Antonio, Texas
IPA Conference
(in conjunction with the AMDA Patient Conference)

2005

May 9-13, 2005 in Nantes, France
AFM-IPA Conference
(in conjunction with the Association Française contre les Myopathies)

2004

October 9-10, 2004 in Birmingham, England
GSD (UK) Patient Conference and IPA Meeting

2003

October 31 - November 2, 2003 in Heidelberg, Germany
IPA Conference

1999

July 2-4, 1999 in Naarden, Netherlands
First Meeting of the International Pompe Association

 

IPA Board

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Chairman/President
Tiffany House
Acid Maltase Deficiency Association (AMDA)
Email: Tiffany@worldpompe.org

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Secretary General
Wilma Treur
Vereniging Spierziekten Nederland (VSN)
Email: watreur@ziggo.nl

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Treasurer
Helmut Erny
SHG Glykogenose Deutschland e.V. (German GSD Association)
Email: helmut.erny@t-online.de

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Board Member
Allan Muir
AGSD(UK) GSD Type II Representative
Email: allan.muir@agsd.org.uk

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Board Member
Thomas Schaller
Pompe Deutschland e.V. (Pompe Germany)
Email: schaller@mpompe.de

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Board Member
Paula Waddell
Email: abbelpaula@gmail.com

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Board Member
Fabio Di Pietro
Email: fabiodipietro.78@gmail.com

Helen Walker

Board Member
Helen Walker † 30th Nov 2012
Australian Pompe’s Association (APA)

In Memoriam

Board members are appointed for a maximum period of three years. They can be reappointed an indefinite number of times.

 

IPA Advisors

Randall House

Randall House
Acid Maltase Deficiency Association (AMDA)
Email: tianrama@aol.com

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Ria Broekgaarden
Vereniging Spierziekten Nederland (VSN)
Email: ria.broekgaarden@vsn.nl

Kevin O'Donnell

Kevin O'Donnell
Email: kevin@embra.org

Arnold Reuser

Dr. Arnold Reuser
Email: arnoldusreuser@outlook.com

 

IPA Communications Coordinator

Maryze Schoneveld van der Linde

Communications Coordinator
Maryze Schoneveld van der Linde
Vereniging Spierziekten Nederland (VSN)
Email: maryze@xs4all.nl

 

IPA Committees

Patient Organization Committee
Marylyn House, Acid Maltase Deficiency Association (AMDA)
Email: tianrama@aol.com

Scientific Committee
Ria Broekgaarden, N.N.

Legal Committee
Ria Broekgaarden, Helmut Erny

Website/Internet Committee
Tiffany House, Thomas Schaller

Financial Committee
Helmut Erny, Marylyn House