About Primary Immune Deficiency - UK

Primary Immune Deficiency - UK (PID-UK) is the umbrella body for five patient support groups in the United Kingdom. Each is a registered charity and most, if not all, are patient led.

Each group specialises in different categories / types of Primary Antibody Deficiency (PAD) and other Primary Immune Deficiency (PID) conditions.

Below is a list of these key organisations with brief descriptions of what they do and their areas of expertise.

Jump to their respective websites from this list by either clicking on their logo or the description alongside.

AT Society

Ataxia-Telangiectasia (A-T) is a progressive genetic condition which causes severe disability and shortens lives. The A-T Society works to improve quality of life and care for people living with A-T while promoting research to lengthen lives and find a cure.

Visit the AT Society Website: http://www.atsociety.org.uk

Find the A-T Society on Facebook. Email the A-T Society.


HAE UK is an association of HAE (Hereditary Angioedema) patients working together to improve the situation for all HAE patients in the UK.

Visit the HAE UK Website: http://www.haeuk.org

Find HAE UK on Facebook. Follow HAE UK on Twitter. Email HAE UK.

Max Appeal

A support group for persons affected by Digeorge Syndrome, VCFS and 22Q11.2 Deletion, their families and carers. Max Appeal provide provisional medical information, support with medical issues, education and social issues. They promote research and are involved in local and national activities as well as the education of medical professionals and the general public.

Visit the Max Appeal Website: http://www.maxappeal.org.uk

Find Max Appeal on Facebook. Follow Max Appeal on Twitter. Email Max Appeal.


To promote and protect the physical and mental health of sufferers of Primary Antibody Deficiencies (PAD) and other Primary Immune Deficiencies (PID) in the United Kingdom. UKPIPS achieves this through the provision of support, education and practical advice to advance the education of the general public in all areas relating to Common Variable Immuno Deficiencies (CVID).

Visit the UKPIPS Website: http://www.ukpips.org.uk

Find UKPIPS on Facebook. Follow UKPIPS on Twitter. Email UKPIPS.

XLP Research Trust

Founded in 2005, the XLP Research Trust exists to:

  1. Promote and fund research into the cause, management, symptoms and cure for XLP.
  2. Provide a point of contact and support for those families affected by XLP.
  3. Raise the awareness of XLP amongst the medical profession and the general public.

Visit the XLP Research Trust Website: http://www.xlpresearchtrust.org

Email the XLP Research Trust.

CGD Society

The objectives of the CGD Society are:

  1. The relief of persons suffering from chronic Granulomatous Disorder or other Primary Immune Deficiencies (PID) or related illnesses.
  2. The advancement of medical research into the causes, cure, prevention or relief of such disorders and/or illnesses and the publication of the useful results of that research.
  3. To advance the education of the public on the subject of such disorders and/or illnesses.
  4. Such other purposes as are charitable according to the laws of England and Wales for the benefit of the public.

Visit the CGD Society Website: http://www.cgdsociety.org

Find the CGD Society on Facebook. Follow the CGD Society on Twitter. Email the CGD Society.