UK patient organisations

Other specialist organisations in the UK supporting people affected by primary immunodeficiency are:

Action for A-T

Action for A-T

Action for A-T (ataxia-telangiectasia) works to speed up the process of identifying a cure for A-T or treatments that delay or prevent the disabling effects of this childhood condition by funding research. For further information go to: www.actionforat.org

Ataxia UK

Ataxia UK

Ataxia UK works across the whole of the UK and supports everyone affected by ataxia: people with the condition, their families, carers and friends. It funds research into developing safe, effective treatments with the aim of finding a cure for ataxias. For further information go to: www.ataxia.org.uk

Ataxia-Telangiectasia (A-T) Society

Ataxia-Telangiectasia (A-T) Society

The Ataxia-Telangiectasia Society, also known as the A-T Society, works to improve the quality of life and quality of care for people living with A-T while actively promoting research to lengthen lives and ultimately bring about a cure. For further information go to: www.atsociety.org.uk

Aspergillus Patient Support

Aspergillus Patient Support

The Aspergillosis Support Group is funded by the Fungal Infection Trust. It supports people with a suspected or confirmed diagnosis of aspergillosis by providing information, online forums and patient support meetings. For further information go to: www.aspergillus.org.uk

Chronic Granulomatous Disorder Society

Chronic Granulomatous Disorder Society

The Chronic Granulomatous Disorder (CGD) Society supports individuals and families affected by CGD in the UK and worldwide by providing comprehensive information and supporting research into better treatments and a cure. In the UK it provides nursing services and support events for families affected. For further information go to: www.cgdsociety.org

HAE (Hereditary Angioedema) UK

HAE (Hereditary Angioedema) UK

HAE UK is an association working to support all HAE patients in the UK. It is the leading source of information about HAE and provides advice and patient events to support those affected. For further information go to: www.haeuk.org/

Max Appeal!

Max Appeal!

Max Appeal! supports families affected by DiGeorge syndrome, VCFS and 22q11.2 deletion. It provides information and resources, and runs events for people of all ages to share experiences, develop and learn. For further information go to: www.maxappeal.org.uk/

Scottish Paediatric & Adolescent Infection & Immunology Network

Scottish Paediatric & Adolescent Infection & Immunology Network

The National Managed Clinical Network for Paediatric HIV and Primary Immune Deficiency (SPAIIN) is a Scottish National Network working to improve access to and the quality of services for children with primary immune deficiency and HIV. For further information go to: www.spaiin.scot.nhs.uk/

Wiskott–Aldrich Foundation

Wiskott–Aldrich Foundation

The Wiskott–Aldrich Foundation is a worldwide organisation dedicated to funding research to find improved cures, providing up-to-date information and supporting families living with Wiskott–Aldrich syndrome. It provides an online community for those affected. For further information go to: www.wiskott.org/

XLP (X-linked lymphoproliferative syndrome) Research Trust

XLP (X-linked lymphoproliferative syndrome) Research Trust

The XLP Research Trust supports families worldwide affected by X-linked lymphoproliferative syndrome (XLP), which is also known as Duncan’s syndrome. It promotes and funds research into the cause, management, symptoms and cure for XLP; provides a point of contact and support for those families affected by XLP; and raises the awareness of XLP among the medical profession and the general public. For further information go to: www.xlpresearchtrust.org/