Publications

IPOPI Patient Information Leaflets - Diagnosis of PID, Moving from Child to Adult care and PID in adults

This second series of IPOPI patient information leaflets comprises helpful information and guidance for patients, their families and other interested stakeholders of the Primary Immunodeficiencies (PID) community.

The IPOPI PID Patient Needs & Outlooks Survey was carried out during the second half of 2011 and is based on completed questionnaires from 300 patients and care-givers of people living with a primary immunodeficiency and treated with immunoglobulin replacement therapy.

As 2012 marks the 20th anniversary of IPOPI, it is a great pleasure to report on the numerous achievements and activities carried out by IPOPI in the last two years. The new IPOPI Review of Activities and Achievements for 2010-2011 is now available for download here.

IPOPI has published three information leaflets comprising helpful information and guidance for patients, their families and schools as well as other interested stakeholders.

IPOPI’s recently released a co-edited issue of Pharmaceuticals Policy and Law in collaboration with Professor Jose-Luis Valverde (University of Granada, Spain) looking at Health Technology Assessments (HTAs) and Rare Diseases Therapies.

This new IPOPI publication is now available for download on our website. Within a national healthcare system, selection of immunoglobulin (IG) therapies for conditions such as Primary Immunodeficiencies (PIDs) is difficult. In well-resourced countries, regulatory agencies make key decisions regarding such therapies' quality and safety; such regulatory agencies, including the U.S. Food and Drug Administration (FDA) and the European Medicines Evaluation Agency (EMEA), are dedicated to assessing products and to granting marketing licenses.

This new IPOPI report summarizes some of the highlights of the XIVth ESID Meeting's scientific programme. IPOPI would like to thank Dr Peter Spaeth for his precious help with this document.

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Booklets on 6 primary immunodeficiencies

Thanks to a generous sponsorship from CSL Behring and great support from the Immune Deficiency Foundation (IDF) USA it has been possible for IPOPI to produce booklets with descriptions of 6 different immunodeficiencies:

Maj-Lis Hellström, founder in 1978 of PIO, the Swedish organisation for patients with primary immunodeficiency, and an officer of the IPOPI board for eight years, has put together a collection of stories from 14 countries. 49 authors mainly patients and parents, but also doctors and nurses have contributed to this book.

A helpful guide for patients and caregivers By Sara J. LeBien

IPOPI Review of 2008-2009

This issue of the Pharmaceuticals Policy and Law series (Volume 10) published by IOS press and edited by Professor Jose-Luis Valverde, was co-edited by David Watters, IPOPI and released in February 2008. The publication brings together articles from various expert authors...

PID Glossary

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Travel With PID

t is suggested that people with primary immunodeficiencies who are traveling abroad write in advance to hospitals on their itinerary in order to reconfirm their treatment procedure

List of Some Primary Immunodeficiencies

The World Health Organization (WHO) recognizes over 150 primary immunodeficiencies including X-Linked Agammaglobulinemia (Bruton's Disease), Common Variable Immunodeficiency (also called Hypogammaglobulinemia), Selective IgA Deficiency, and Severe Combined Immunodeficiency (boy-in-the-bubble disease).

IPOPI Order Form For Publications

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1st National Member Organisation (NMO) survey report

1st NMO Survey

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The following hardcopies can be requested from IPOPI:

The Immune System and its Deficiencies
This booklet explains how the immune system works. It is a simplification of what actually happens. We also discuss what occurs when the immune system does not function properly. The booklet is intended for those who are confronted with immune deficiencies through their families and friends.

Author: Kees Waas © IPOPI, 2002.

The booklet can be requested from IPOPI free of charge.

From The Immune Deficiency Foundation (IDF), USA the following publications can be retrieved on-line (www.primaryimmune.org):

Our Immune System
This booklet is meant to help small children understand the immunsystem and its disorders and thereby free them of confusion and worries.
The booklet has been translated into many languages.
Author: Sara LeBien, Immune Deficiency Foundation, USA
IDF Patient and Family Handbook for The Primary Immune Deficiency Diseases, 3rd edition
This book contains general information which cannot be applied safely to any individual case. Medical knowledge and practice can change rapidly. Therefore, this book should not be used as a substitute for professional medical advice.

A Spanish version is available:

Manual del Patiente Y La Familia (en espanol)
helpful guide for patients and caregivers.

A French version is available:
Manuel de l’IDF Destiné au Patient et sa Famillle (en francais)

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Other key external publications include:

PLUS - Dublin Consensus Statement 2011

The Dublin Consensus Statements 2011 on vital issues relating to the collection and provision of blood components and plasma-derived products. You can access the document here.

PLUS - Dublin Consensus Statement 2010

The Dublin Consensus Statement 2010 on vital issues relating to the collection of blood and plasma and the manufacture of plasma products. You can access the document here.

Expert recommendations on Better Management of Primary Immunodeficiencies

In March 2010, IPOPI participated in an expert group meeting on Primary Immunodeficiencies held at the European Parliament in Brussels, Belgium. The key outcome of this meeting is the publication of a set of expert recommendations to the attention of EU Member States decision makers on necessary actions that need to be taken to improve the management of PIDs. You can access the document here.

Publications

IPOPI Patient Information Leaflets - Diagnosis of PID, Moving from Child to Adult care and PID in adults

IPOPI PID Patient Needs & Outlooks Survey

IPOPI Review of 2010-2011 (20th anniversary edition)

IPOPI Patient Information Leaflets (Treatment, General Care and Information to Schools)

Health Technology Assessments (HTAs) and Rare Diseases Therapies

Safety and Efficacy of Immunoglobulin: A Guide for Users, Assessors and Funders

Report of the scientific sessions of the XIVth Meeting of the European Society for Primary Immunodeficiencies

Booklets on 6 primary immunodeficiencies

The Story of Primary Immunodeficiencies "Despite the challenges, the story is not one of despair"

Living With Primary Immunodeficiencies

IPOPI Review of 2008-2009

Focus on Immunodeficiencies

PID Glossary

Travel With PID

List of Some Primary Immunodeficiencies

IPOPI Order Form For Publications

1st National Member Organisation (NMO) survey report