Primary Immunodeficiencies in the spotlight
The sixth World Primary Immunodeficiencies Week will take place from the 22nd-29th April 2016. World PI Week is part of a global campaign to raise awareness, improve diagnosis and treatment and to provide information and support to people with primary immunodeficiencies, their families and carers and the health care workers who look after them.
Founded in 2011 by diverse international immunodeficiency foundations and immunological societies, including INGID, World PI Week is a focal point for organisations and individuals concerned about primary immunodeficiencies. INGID Vice-President, Carla Duff, says “World PI Week gets to the heart of why we need organisations like INGID. Sharing information about state-of-the-art diagnostic and treatment options around the globe is a critical part of the week, but equally important is the sharing of personal experience and the building of a supportive community for those on the frontline of dealing with primary immunodeficiencies”. The importance of a supportive community cannot be understated – as one INGID member reflected, “It is a precious moment when you learn that, even if you have a rare disease, you are not alone!”
Events around the globe range from awareness-raising activities in immunology clinics, to educational workshops and conferences for physicians and nurses and the sharing of personal experiences through the World PI week website (www.worldpiweek.org). With partner organisations from Europe, Latin America, North America, Australia and Africa, World PI Week reaches a huge diversity of communities dealing with primary immunodeficiency. The by-line for World PI Week is “Test. Diagnose. Treat”, which as Carla Duff explains, speaks to the diverse experiences across the globe. Carla says “World PI Week can really drive important changes to the care available to people with PI. For example, highlighting the importance of PI registries and multi-centre studies in Europe has informed the advance of research in Africa – obviously not only as a result of World PI Week – but these sorts of events do have the potential to generate momentum for new initiatives, and the development of international networks of immunodeficiency specialists is a really critical part of developing skills and disseminating effective interventions.”
Explore the World PI Week website (www.worldpiweek.org) to find out more about how you can get involved and ultimately improve the quality of life of people with PI world-wide.