May 2011.
in this edition
From the chairperson's desk
PLUS Consensus Meeting >
EPPOSI's workshop >
WPI week >
IPOPI meets in Istanbul >
New site & Facebook page >
IPOPI attends IPPC >
A growing family >
Around the world:
PID Conference in India >
Meeting of the AAPIDP >
IPINET Report >
1st PID Meeting in Lisbon >
Anniversary of the dsai >
From the Chairperson's desk...
The Chairperson writes...

Let me begin by apologising for the long gap since the last e-news! We last wrote just before the Istanbul Congress - and since then it has been 'all systems go' as you will have seen from the number of activities we are currently involved with. We have also been extremely busy planning for the future of IPOPI - our 2012 fundraising proposal is complete and now with stakeholders.

IPOPI Participates in PLUS Dublin Consensus Meeting
In January 2010 PLUS hosted a landmark Consensus Meeting in Dublin at which the first steps were taken towards achieving a broad agreement - a consensus - on the collection of plasma for use in fractionation. While much as achieved at this meeting there was not a full endorsement of the final statement by the participating organisations

IPOPI participates in EPPOSI's 11th Partnering for Rare Diseases Therapy Development Workshop
As an active member organisation of the European Platform for Patients' Organisations, Science and Industry (EPPOSI), IPOPI staff attended the 11th Partnering for Rare Diseases Therapy Development Workshop held in Prague on the 29 and 30 November 2010 under the auspices of the Czech Ministry of Health.

World Primary Immunodeficiencies Week (WPIW) - The latest success story for the Primary Immunodeficiency community
The first World Primary Immunodeficiencies Week (WPIW) was held from April 22nd to 29th 2011 and it is fair to say that for a first year this project was a real success.

The idea behind WPIW was to build on the success of the Day of Immunology launched on April 29th 2005 by the European Federation of Immunological Societies (EFIS) and internationally since 2007 to raise awareness amongst the public, the press, politicians and decision makers about the critical importance of the immune system in everybody's everyday life.

IPOPI meets in Istanbul
IPOPI met in Istanbul last October in what the locals described as the worst October weather for many years! We met alongside INGID and through the generosity of ESID with whom we have shared this meeting now for many years.

The IPOPI meeting was greatly marred by the fact the DHL failed to deliver our exhibition, conference folders, literature, or indeed ANY of our material before the Congress finished which was a source of sadness and a great deal of work had gone into the preparation and dispatch of the materials from our UK office. At the end of the day DHL made no charge for their inappropriate handling of the task allocated to them.

IPOPI Launches New Website & Facebook Page
IPOPI recently released its new strategic plan for the 4 years to come. As part of this plan and its commitment to enhance the visibility of the organisation and primary immunodeficiencies worldwide, IPOPI launched its new website on May 5th 2011.

IPOPI attends International Plasma Protein Congress in Lisbon
IPOPI attended the 17th International Plasma Protein Congress (IPPC) in Lisbon, Portugal on 15 and 16 March 2011. The congress organised every year by the Plasma Protein Therapeutics Association (PPTA) looked this year at an array of interesting topics such as issues pertaining to access to Care, plasma collection, regulatory aspects and 'the World without Industry Standards' in which Johan Prevot provided a presentation on 'Nice to have or real value'.

IPOPI - A growing family
For the first time in the history of IPOPI, 9 new National Member Organisations (NMOs) were welcomed during a general assembly meeting held in Istanbul Turkey in October 2010. The new NMOs include Austria; Belgium, Brazil, Colombia, Greece, Japan, Mexico, Portugal and Turkey. This brought IPOPI's membership from 28 to 37 NMOs.

IPOPI attends PID Conference in India
The 1st International Conference on Primary Immunodeficiency Diseases in India was held on 4-6 March 2011 in New Dehli. Dr Teresa Espanol, Chair of IPOPI's Medical Advisory Panel (MAP) attended the conference on behalf of IPOPI. The meeting was sponsored by the Indian Society for Primary Immune Deficiency (ISPID) , the Foundation for Primary Immunodeficiency Diseases (FPID - President S. Gupta , from California Univ. ) , the Postgraduate Institute of Medical Education of India and the University of California, and organized by Prof Surjit Singh from Chandigarh Hospital.

3rd Regional Meeting in Mar del Plata, Argentina of the Argentine Association AAPIDP for Primary Immunodeficiencies and the International Patient Organisation with Primary Immunodeficiencies.
The 3rd Regional Meeting of the AAPIDP and IPOPI was organized in Mar del Plata Academy of Medicine, Argentina on April 15th and 16th, 2011 under the patronage of Dr. Matias Oleastro and Fabiana Monteagudo, Gustavo Pena and Roberta Anido de Pena on behalf of AAPIDP.

IPINET Report (Prof.Plebani 2011)
Italian Primary Immunodeficiency Network (IPINET): a model for improving the clinical assistance to patients with primary immunodeficiencies (PIDs)

PIDs are uncommon, chronic and severe disorders of the immune system in which patients cannot mount a protective immune response, leading to an increased susceptibility to infections. The type and severity of infections is largely dependent on the arm of the immune system which is affected. Despite major advances over the last 20 years in the characterization of the molecular defects causing these disorders, many patients still go undiagnosed or are diagnosed late, with adverse clinical consequences.

IPOPI co-organizes first Primary Immunodeficiency Patients Meeting in Lisbon, Portugal
Portuguese patients and Primary Immunodeficiencies (PID) stakeholders including doctors, nurses, industry representatives and the Portuguese Rare Diseases organisation came together for the first time at the National Faculty of Medicine in Lisbon on 23 October to discuss issues facing people living with PID in Portugal.

20 year Anniversary of the dsai (German patient organisation for PID)
In June 1991, 19 people founded an Association for patients with Primary Immunodeficiencies in Germany, the "Deutsche Selbsthilfe angeborene Immundefekte e.V. -dsai. Since then, this little club has grown- not only through the number of members which has increased to 600, but with significant milestones and success stories. dsai has achieved a lot since then.

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Contact Details: www.ipopi.org , Email: info@ipopi.org