Our History

The International Patient Organisation for Primary Immunodeficiencies (IPOPI) came into being as a result of an initial meeting in Oxford, UK, in September 1990, when an interim organising committee was established and a further meeting two years later in Lugano, Switzerland, when IPOPI was formally established.

Prominent among those responsible for the creation of this organisation were Bob LeBien from the IDF in the USA; Dr Helen Chapel who is a leading UK clinical immunologist; Martin Gatehouse a parent from Switzerland; Robin Fanshawe and Fiona Sandford from the PiA in the UK and Maj-Lis Helstrom from Sweden.

It is also essential to record IPOPI’s indebtedness to ESID (the European Society for Immune Deficiency), the organisation for clinical immunologists in Europe under whose aegis IPOPI meets every two years. IPOPI has also enjoyed the privilege of a wonderful and close working relationship with INGID (the International Nurses Group for Immune Deficiency). To both those organisations IPOPI record their thanks for their nurture and support.

Since the Lugano meeting in 1992, IPOPI has met as follows:

1994          Sitges, Spain
1996          Goteborg, Sweden
1998          Rhodos, Greece
2000          Geneva, Switzerland (transferred from Israel)
2002          Weimar, Germany
2004          Versailles, France
2006          Budapest, Hungary
2008          ‘S-Hertogenbosch, Netherlands

IPOPI has the following objectives:

1. Working to improve access to early diagnosis and optimal treatment and care.
    
2. Promoting the establishment of and supporting the work of National Member Organisations (NMOs).
    
3. Being a strong and effective global voice for NMOs.

Over the years the following have served as Chairpersons of IPOPI:

• Martin Gatehouse, Switzerland
• Bob LeBien, USA
• Louise Carroll, New Zealand
• Kees Waas, Netherlands
• Bianca Pizzera, Italy

Bob LeBien was appointed Honorary Life President of IPOPI in recognition of his outstanding contribution to the formation and nurture of IPOPI in the early years and his sustained interest since that time. In 2007 IPOPI was greatly honoured when Dr Helen Chapel, one of our founders, graciously accepted the position of Honorary Vice-President of IPOPI.

IPOPI has only recently obtained the services of David Watters as part-time Executive Director. For some years IPOPI purchased professional services from the PiA, the UK national member organisation representing the interests of people with primary immunodeficiency in that country and where, until his retirement in February 2005, David Watters was CEO. IPOPI relies very much on the generosity and enthusiasm of Board members for much of its work.

A significant role has been played in sustaining the work of IPOPI through the generosity of the Immune Deficiency Foundation (IDF) and the Jeffrey Modell Foundation (JMF) in the United States, both of whom have provided generous funding to allow the work of IPOPI to proceed. IPOPI is also indebted to those pharmaceutical companies involved in the production of immunoglobulins for their sustained interest and support over the years and in particular for the funding of the International Development Programme (IDP) which enabled new organisations to emerge, publications to be produced in local languages as well as enabling people to travel to our two-yearly meetings.

In 2004 IPOPI made a significant presentation to the European Parliament’s Scientific and Technological Assessment Options Committee (STOA) and following on from that a poster was presented at the European Rare Disorders Conference in Luxembourg in June 2005 which highlighted the dangers of late diagnosis of immune disorders.

Also in 2005 a significant European Commission grant was secured to enable a European Consensus Conference to take place in 2006. The outcomes from this highly successful Consensus Conference can be viewed a www.eupidconference.com .

In 2006 IPOPI, working in close harmony with the International Union of Immunological Societies (IUIS) started to work towards having immunoglobulin restored to the World Health Organisation’s List of Essential Medicines (EML). Immunoglobulins had been removed in 2003 and an unsuccessful attempt was made in 2005 to achieve re-instatement. This work reached fruition in March 2007 when we were able to make direct representations to the EML Committee in support of our goal. We are especially grateful to Sir Christopher Mallaby and Dr Surjit Singh who spoke on behalf of IPOPI and, of course, Dr Helen Chapel for her continuous work and support over the months leading up to the meeting at WHO. In the event we were successful and we hope that this will help encourage a programme of immunoglobulin use in developing countries. Full details of the application and all supporting documentation can be found on the IPOPI website along with a link to the WHO EML publication.