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; Professor 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 'sHertogenbosch, Netherlands
IPOPI has the following objectives:
- To ensure optimal access to early diagnosis & care
- To develop, strengthen and support National Member Organisations
- To enhance IPOPI and PID visibility globally
- To increase efficient governance of a well resourced developing organisation
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
- Josina Drabwell, UK
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 Professor Helen Chapel, one of our founders, graciously accepted the position of Honorary Vice-President of IPOPI. Upon her retirement as Chair, and in recognition of her outstanding contribution to the life of IPOPI, Bianca Pizzera honoured IPOPI by becoming our second global Vice-President.
IPOPI has since 2005 benefitted from 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. In addition we now employ part-time secretarial and administrative staff in our offices in the UK.
IPOPI recognize their debt of gratitude to the Immune Deficiency Foundation and the Jeffrey Model Foundation for their generosity in supporting IPOPI in earlier times. IPOPI is now indebted to those pharmaceutical stakeholders involved in the production of immunoglobulins for their sustained interest and support over the years and especially for their unrestricted educational grants to IPOPI which enable new organisations to emerge, publications to be produced in several 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.
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, Professor 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.
In 2007 IPOPI was accepted as a member of the WHO Global Collaboration on Blood Safety. This aspect of our work has brought us into closer contact with the global framework of those concerned with the collection and safety of blood and plasma products.
While IPOPI has maintained its policy of producing the absolute minimum of printed material, concentrating instead on our website and electronic communication, funding became available in 2007 which enabled IPOPI to start work on the production of booklets in five international languages. The conditions covered in the series are CVID, SCID, XLA, WAS, CGD and the languages were German, Spanish, French Portuguese and English. In 2008 the booklets were completed and Russian added to our list of languages. During 2008 we were also able to translate our electronic newsletter into our, now six, standard languages.
In 2008 the membership the Medical Advisory Panel was reviewed as some members were no longer in clinical practice. Panel members now come from France, Italy, New Zealand, Poland, Sweden, Israel, Switzerland, UK, and the USA and this continues to give IPOPI a rich background of clinical experience.
Also in 2008 during the biennial in ´sHertogenbosch IPOPI for the first time handed out the "Vasalli Award" to a Young Adult (Erik Andersen, Norway) who has done extraordinary things for the Primary Immunodeficiency society.
In 2009, IPOPI organized its first Global Leaders Meeting, an ongoing global forum for establishing international priorities to improve diagnosis and management of the primary immunodeficiencies through research, advocacy and education.
In 2010, IPOPI expanded its staff with the creation of a Director of Development position to further strengthen IPOPI's network of National Member Organisations and IPOPI's health policy advocacy activities.
Registration No. 1058005