Useful Links

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.

Jeffrey Modell Foundation

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.

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.

UK Primary Immunodeficiency Network (UKPIN)

This is a multidisciplinary membership organisation of doctors and nurses who care for people affected by PIDs. UKPIN has 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 by immunology teams involved in the care of patients affected by PIDs.

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.

UKPIN is working to establish standards of care for immunodeficiency conditions through consensus, for use by immunologists and immunology specialist nurses.

The UK Primary Immune Deficiency Registry: UKPID Registry is run by UKPIN. The registry aims to capture core data on all patients affected by PIDs in the UK.

The registry is run in conjunction with the European Society for Immune Deficiency (ESID) online database. The UKPID Registry is now established on servers based at the Royal Free Campus of University College London. The data is encrypted and stored on secure servers. Ethical approval has been obtained from the National Research Ethics Service (04/MRE07/68).

Data is added only after the patient gives informed consent. The patient data is anonymised. Each major PID has its own sub-registry and further development of these is ongoing.

Where appropriate consent has been obtained, data captured within the UKPID Registry is shared with the ESID database so that a European-wide picture of those people affected by PIDs is achieved.

The aim is to use the information as an evidence base for raising awareness of the health burden of PIDs for government and to underpin high-quality research for better diagnosis, treatment and care for people affected by PIDs.

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.

British Society for Immunology

The British Society for Immunology works to promote and publicise research and good practice in immunology, translational medicine and vaccination.

Within this organisation the Clinical Immunology and Allergy Section focuses on fostering excellence in practising immunological medicine.

Immunology and Allergy Nurses Group

This group is for nurses involved in treating patients with immunological disorders. They meet and correspond electronically to discuss the management of patients and expand their knowledge through education and networking.

International Nursing Group for Immunodeficiencies

The aims of the International Nursing Group for Immunodeficiencies are to improve and extend the quality of nursing care of patients with PIDs, and to increase the awareness and understanding of PIDs 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 PIDs.

ESID has several working parties that are helping to develop better treatments and care for PIDs.

This group works to improve quality of care for PIDs through 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 PIDs so as to improve diagnosis and genetic counselling for PIDs now and in the future.

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 PIDs.

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.

Clinical Immunology Society

The Clinical Immunology Society works to improve education, translational research and novel approaches to therapy in clinical immunology, in order to improve care for patients with immunologic/inflammatory disorders.

Royal College of Pathologists

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 August 2022