Useful Links
International PID support groups
The International Patient Organisation for Primary Immunodeficiencies (IPOPI) is an association of national patient organisations dedicated to improving awareness, access to early diagnosis and optimal treatments.
A list of international primary immunodeficiency support groups can be found on the IPOPI website.
Immunodeficiency UK is the UK’s national member organisation of IPOPI.
The Jeffrey Modell Foundation is dedicated to early diagnosis, meaningful treatments and, ultimately, cures through research; physician education, public awareness, advocacy, patient support and newborn screening. It supports expert immunology centres around the world.
Professional organisations
Below you will find a list of professional organisations that are working to improve the diagnosis, management and treatment of primary immunodeficiency (PID), through the collaboration of clinicians and nurses within the UK and around the world.
British Society for Immunology
The British Society for Immunology works to promote and publicise research and good practice in immunology, translational medicine and vaccination.
The British Society of Immunology Clinical Immunology Professional Network (BSI-CIPN)
This is a multidisciplinary membership organisation of doctors and nurses who care for people affected by PID.
They have developed in collaboration with the Royal College of Physicians an officially recognised accreditation process known as Quality in Primary Immunodeficiency Services (QPIDS) to ensure a high quality of service from immunology teams involved in the care of patients affected by PID.
The accreditation process concentrates on six main areas:
- Staffing levels required for immunodeficiency services
- Facilities required
- Organisation and administration of the service
- Quality of the clinical care to be provided
- Home therapy training and support for patients
- Audit, education and management of the service.
The UK Primary Immunodeficiency Registry (UKPID Registry)
This is an on-line registry of primary immune deficiency and secondary antibody deficiency patients in the UK. It aims to provide a comprehensive picture of these conditions in the UK. With patient consent, their data is entered into a secure database.
If you are not on the registry and you want to help, please tell your doctor. You can find out more about the registry here.
International Nursing Group for Immunodeficiencies
The International Nursing Group for Immunodeficiencies aims to improve and extend the quality of nursing care of patients with PIDs, and to increase the awareness and understanding of PID among nurses.
European Society for Immunodeficiencies
The European Society for Immunodeficiencies (ESID) works to help the exchange of ideas and information among doctors, nurses, biomedical investigators, patients, and their families concerned with PID.
ESID has several working parties helping to develop better treatments and care for PID.
This group works to improve quality of care for PID through the development of consensus of care statements on diagnostic guidelines and therapy.
This group brings together information on the who, what, where, and how of genetic evaluation of PID so as to improve diagnosis and genetic counselling for PID now and in the future. I
This group oversees the ESID online registry that captures information on PID patients through patient-informed consent. Several national registries, including those in the UK, France, Spain, Italy, and Germany, share their anonymous data with the ESID registry to provide a comprehensive source of information on PID.
Association of Clinical Pathologists
Clinical pathology is a core medical specialty involved in the diagnosis and treatment of disease.
British Society for Allergy and Clinical Immunology
The British Society for Allergy and Clinical Immunology’s core aim is to improve allergy care. Its members work across many medical specialities, including allergy, immunology and paediatrics, ENT, dermatology and respiratory medicine.
The Clinical Immunology Society works to improve education, translational research, and novel approaches to therapy in clinical immunology, to improve care for patients with immunologic/inflammatory disorders.
This is a membership organisation for doctors and scientists that aims to advance the science and practice of pathology (the diagnosis and treatment of disease), to provide public education, to promote research in pathology and to educate people about the outcomes of research.
Updated May 2025
