From small beginnings to international influence: 22 years of INGID

In 1994, a small group of nurses from the UK, Sweden, Norway and New Zealand established the International Nursing Group for Immunodeficiencies (INGID) as a way of providing support within the emerging field of immunodeficiency nursing. Two aims were expressed at that first INGID meeting; the first to improve and extend nursing care of people with immune deficiencies and the second to increase awareness and understanding of immune deficiencies. These aims were to be pursued through the development of an international network of nurses who could share knowledge and experience, and through creating a base for international research collaboration.

Through the hard work of its board, INGID forms a crucial third pillar of organisations supporting patients with primary immunodeficiencies, working closely with the European Society for Immunodeficiencies (ESID) and the International Patient Organisation for Primary Immunodeficiencies (IPOPI). Biennial meetings have been held in countries such as Sweden, Greece, Turkey and many places in between, engaging local nurses and expanding INGID’s network of specialised nursing professionals. INGID was a primary contributor to the 2006 European Primary Immunodeficiencies Consensus Conference which brought together health professionals from across Europe to develop recommendations for improved diagnosis and treatment of primary immunodeficiencies, and has provided support for the African Society for Immune Deficiencies and the Latin American Society for Immune Deficiencies.

The INGID website was initially launched in November 2000, providing a gateway for communication between INGID members from across the world and dissemination of resources and information for nursing and nursing support. Redesigned and re-launched in late 2015, the INGID website is a repository of critical resources for immunodeficiency nursing, including an online training course on the use of immunoglobulin replacement therapy and, later in 2016, new nursing guidelines for immunodeficiency treatment. The new guidelines will be the first set of nursing guidelines published for the treatment of patients with primary immunodeficiencies and represent the culmination of years of experience, discussion and collaboration within the INGID community.

INGID emerged as an organisation at a time when primary immunodeficiencies were drastically under-diagnosed and under-resourced. Over the 22 years since its inception, INGID has become one of the principal organisations promoting education, resourcing and improved treatment for people with primary immunodeficiency diseases. Keep an eye out for the new nursing guidelines as INGID continues to pursue its original aims – better outcomes for patients, and more support and awareness of primary immunodeficiency diseases.

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