The network of PI stakeholders is vast and spans the globe. See below for a list of patient groups and steering committee members.
APSID aims to care and cure patients with primary immunodeficiency (PID); share PID experience so as to promote collaboration & education; improve PID management through understanding its genetics & pathogenesis and advocate and advance the care of PID patients through engaging governments, patient organizations & industry.
The Arab Society of Primary Immunodeficiency (ARAPID) is comprised of clinical immunologists, nurses, pharmacists, and researchers interested in Primary Immunodeficiency Diseases (PID) in all Arabic speaking countries. ARAPID goals are to help Arabic speaking patients and professional communities to gain a broad understanding of PIDs through comprehensive education materials in both Arabic and English. ARAPID also supports professional conferences which contribute to enhance patients access to a full range of treatment options. More on www.arapid.org
The African Society for Immunodeficiencies (ASID) aims to the care of people living with PI, and raise awareness around PI, which are largely unknown and under treated in Africa. ASID promotes medical education and research, particularly by organizing scientific conferences across Africa, and through training healthcare professionals and biologists on the key aspects of primary immunodeficiencies.
Pr Aziz Bousfiha
The Clinical Immunology Society is an international professional organization which includes more than 650 clinicians, investigators and trainees. The mission of the CIS is to facilitate education, translational research and novel approaches to therapy in clinical immunology to promote excellence in the care of patients with immunologic/inflammatory disorders. Click here to find an immunologist.
EFIS is an umbrella organization that represents more than 12,000 individual members from 28 member societies in 31 European countries and reaches beyond the European boundaries to Israel. Click here to find a member society in your region.
Prof. Amos Etzioni
The Immune Deficiency Foundation (IDF) is the national patient organization of the United States of America. It is dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases; through advocacy, education and research. Since 1980, thousands of individuals, families and healthcare professionals have turned to IDF for vital resources and innovative programs.
The International Nursing Group for Immunodeficiencies (INGID) represents 50 nurse members, from a total of 18 different countries including USA, UK, Australia, New Zealand, South Africa, Morocco, Oman, Canada, Sweden, France, Italy, Greece, Norway, Germany, Netherlands, Switzerland, Portugal and Denmark, working with children and adults diagnosed with primary immunodeficiency disorders. INGID aims to improve and extend the quality of nursing care of patients with primary immune deficiencies, and to increase the awareness and understanding of primary immunodeficiencies amongst nurses.
The International Patient Organisation for Primary Immunodeficiencies (IPOPI) is an international not for profit organisation dedicated to improving awareness, access to early diagnosis and optimal treatments for PI patients worldwide. The following information is designed to help those living with PI obtain a better quality of life. Click here to find a national patient organisations and/or International Support Groups in your region.
Renamed LASID In 2009, LAGID, the Latin American Group for Immunodeficiencies (LAGID) has been working to promote awareness in Primary Immunodeficiencies in Latin American Countries for more than 15 years, and in particular to create registries of PI in each participating country, and to improve educational programs and national scientific meetings with pediatricians to increase early recognition and treatment LASID represents today 14 countries.
Dr. Francesco Espinosa
The Plasma Protein Therapeutics Association (PPTA) is the primary advocate for the world’s leading source plasma collectors and producers of plasma-based and recombinant biological therapeutics. The medicines produced by PPTA members are used in treating life-threatening diseases and serious medical conditions including bleeding disorders, immune system deficiencies, alpha-1 antitrypsin deficiency, burns and shock. As the global representative for the plasma collection and therapeutics industry, PPTA works cooperatively with patient groups, policymakers, regulatory agencies and other stakeholders to address critical issues. Click here to find a member of PPTA.
Julie Birkofer – PPTA
South East Asia Primary Immunodeficiency Network or “SEAPID” is a regional network, established following an accord reached by experts from the six South East Asian founding countries, namely, Indonesia, Malaysia, the Philippines, Singapore, Thailand and Vietnam. SEAPID’s main objective is to support the development and networking of Primary Immunodeficiencies in South East Asia region. Its main mission is to be the coordinating body of the SEA countries in terms of disseminating updated knowledge, promoting expertise through its database and patients’ registry, technology and research pertaining to PID and to provide easier and timely access to much needed resources for patient management among member countries by organizing regional seminars, workshops, and training schools.