Leaflets

IPOPI is glad to release a new series of patient information leaflets during this World Primary Immunodeficiencies Week!

A new series of IPOPI patient information leaflets has just been released! Five new interesting leaflets providing helpful information and guidance for patients, their families and other interested stakeholders of the Primary Immunodeficiencies (PID) community are now available.

Two of these leaflets focus on PIDs and specific related conditions: PIDs and Gastrointestinal disorders and PIDs and Respiratory Disorders. Two others will help patients and their families understand routine medical exams and the medical considerations behind treatment decisions: Management after diagnosis and When to give Immunoglobulin replacement therapy. The fifth leaflet is a step by step guide for the administration of Subcutaneous Immunoglobulin in a safe and informed way: SCIG infusions – a practical guide for patients.

IPOPI is pleased to make these tools available to the international PID Community! Similarly to previous editions the leaflets are available in English, though we expect that translated versions into other languages will be prepared in the coming months with the great collaboration of our NMOs.

IPOPI wishes to thank Octapharma for their support toward the production of the following leaflets:

IPOPI wishes to thank CSL Behring for their support toward the production of the following leaflets:

The third 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.

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.

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

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:

 

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)


World PI Week
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IPOPI would be grateful for any support to the important work for primary immunodeficiencies.

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Contact
Executive Director: Johan Prevot
Email: johan@ipopi.org
Tel/Fax: +351 21 407 5720
UK office
Firside Main Road Downderry
Cornwall PL11 3LE
United Kingdom

Tel: +44 1503 250 668
Fax: +44 1503 250 961
E-mail: info@ipopi.org
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