Getting ready for World PI Week 2017 – International Patient Organisation for Primary Immunodeficiencies (IPOPI)
IPOPI and the primary immunodeficiency (PID) community are pleased to hold the 2017 World Primary Immunodeficiencies Week (WPIW) from April 22 to 29 to raise awareness about PIDs! There are close to 300 identified PIDs affecting an estimated six million people all around the world, many of which remain undiagnosed.
Under the motto ‘Test. Diagnose. Treat.’ IPOPI has been collecting video patient testimonials from several countries (subtitled in English), giving patients the opportunity to share their unique experiences and raise awareness of the specific needs of these conditions.
The latest set of testimonials released features Portuguese patients and their families.
Two sisters living with CVID take us through their shared experience of diagnosis and treatment,mother and her daughter discuss the impact of impact of growing up with a PID and two patients both living with CGD but diagnosed at very different times tell their stories highlighting the importance of early diagnosis.
In the next few days, IPOPI will be launching additional videos featuring a parent’s perspective on SCID and her child undergoing BMT and a man living with XLA who highlights the professional life difficulties of a chronic patient.
Immunoglobulin replacement therapy
This year’s WPIW has a special focus on immunoglobulin (IG) replacement therapy: ‘Ensuring Access to Immunoglobulin Replacement Therapies for Patients with Primary Immunodeficiency’. IGs are lifesaving and lifelong therapies for the majority of PID that should be made available to all PID patients. IGs help patients fight off life threatening infections and live their life to the fullest and are listed as Essential Medicines by the World Health Organization (WHO).
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Two years ago IPOPI led a Working Party of specialists to develop the “Primary Immunodeficiencies Principles of Care” which outlines the 6 key principles that should be in place in each country and region to provide a “gold standard” framework for the diagnosis and care of primary immunodeficiencies (PIDs). This includes specific principles on management of the conditions and treatment options.