Key publications
PIDs included in WHO List of Essential Diagnostic Tests
Primary immunodeficiency (PID) diagnostic tests have been included in the World Health Organization (WHO)’s Essential Diagnostics List (EDL) published by WHO…
European Medicines Agency renews IPOPI’s mandate
The European Medicines Agency (EMA) recently confirmed that IPOPI’s application to renew its mandate on the Patients and Consumers Working Party (PCWP) was successful…
IPOPI Regional African Patients Meeting report published
IPOPI held a Regional African Patients Meeting in Dakar, Senegal during the 11th and 12th of April 2019. The meeting was organised back to back with the 6th ASID…
New IPOPI PID information leaflets published
IPOPI has since 2011 been producing primary immunodeficiencies (PID) information and a new series has just been published. This last series comprises 3 leaflets…
PLUS Consensus principles on strategies to encourage donations
PLUS Consensus principles on strategies to encourage donations
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Safety and Efficacy of Immunoglobulin: A Guide for Users, Assessors and Funders
This IPOPI publication is available for download on our website. Within a national healthcare system, selection of immunoglobulin (IG) therapies for conditions…
Being the parent of a teenager with a chronic illness by Dr Lotte Denning
Leaflet 'Being the parent of a teenager with a chronic illness' by Dr Lotte Denning
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What Is the Burden of Immunoglobulin Replacement Therapy in Adult Patients With Primary Immunodeficiencies? A Systematic Review
This publication is part of IPOPI's Burden of Treatment Survey project.
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IPIC2017 – Congress report
IPOPI is pleased to announce that the IPIC2017 Congress Report is now online!
PIDs and Allergies, PIDs, and Infections, PIDs and Psychological management
IPOPI has since 2011 been producing primary immunodeficiencies (PID) information and a new series has just been published. This last series comprises 3 leaflets…
IPOPI publishes Position Statement on Access to Immunoglobulin Therapies
IPOPI is concerned by recent developments in several countries that may restrict access to the most suitable immunoglobulin (IG) therapy for individual patients…
Asia Pacific Economic Cooperation 2017 publications
APEC Recommendations for Enhancing Access to Safe Therapy for Persons with Immunodeficiency and Bleeding Disorders
APEC Hanoi Recommendations on Implementation…
PID Principles of Care Implementation Package
IPOPI is pleased to announce the publication of the ‘PID Principles of Care Implementation Package’, a new key document designed specifically for our National…
Immunoglobulin replacement therapy, A guide for general practitioners, How are primary immunodeficiencies classified?
The first leaflet 'Immunoglobulin replacement therapy - One size does not fit all' explains the variety of factors that patients with PIDs should consider, and…
Publication of PIDs Principles of Care
Over the last two years, IPOPI combined its efforts with a worldwide multi-disciplinary team of specialists to develop the “Primary Immunodeficiencies Principles…
IPOPI Patient Needs and Outlooks Study Publication
IPOPI is pleased to announce the publication of its survey manuscript looking at Improving current immunoglobulin therapy for patients with primary immunodeficiency:…
IPIC2013 Report of Highlights
The IPIC2013 Report of Highlights is now available online! In this report read about key highlights from the first edition of IPOPI's successful event attended…
PLUS Open Letter to ABO Risk-Based Decision Making
PLUS, the Platform of Plasma Protein Users, represent organisations of patients with treatable rare diseases linked by common therapies based on products manufactured…
The Dublin Consensus Statement 2012 on optimised supply of plasma-derived medicinal products
Irish Haemophilia Society, Steering Group PLUS, Dublin, Ireland
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IPOPI PID Patient Needs & Outlooks Survey
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…
Health Technology Assessments (HTAs) and Rare Diseases Therapies
IPOPI’s recently released a co-edited issue of Pharmaceuticals Policy and Law in collaboration with Professor Jose-Luis Valverde (University of Granada, Spain)…
Focus on Immunodeficiencies
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 First NMO Survey
This is the first international survey carried out by IPOPI. The survey was conducted between February 2010 and August 2010 to establish a mapping of several criteria…
The Story of Primary Immunodeficiencies “Despite the challenges, the story is not one of despair”
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,…
Living With Primary Immunodeficiencies
A helpful guide for patients and caregivers
By Sara J. LeBien
CONTENTS:
Section One WHAT HAPPENS AFTER THE DIAGNOSIS
Section Two WHAT TO EXPECT AS YOUR CHILD…
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…
Report of the scientific sessions of the XIVth Meeting of the European Society for Primary Immunodeficiencies
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…
PID Glossary
PID Glossary
PLUS – The Dublin Consensus Statement on vital issues relating to the collection of blood and plasma and the manufacture of plasma products
PLUS - The Dublin Consensus Statement on vital issues relating to the collection of blood and plasma and the manufacture of plasma products
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