About Ipopi - international patient organisation for primary immunodeficiencies
IPOPI - International Patient Organisation for Primary Immunodeficiencies
IPOPI is a non-profit international organisation that represents primary immunodeficiency patients. The organisation was founded in 1992 and has since then been working tirelessly to improve the lives of people living with primary immunodeficiencies (PIDs). IPOPI is dedicated to raising awareness about PIDs, advocating for better access to diagnosis and treatment, and providing support to patients and their families.
Primary immunodeficiencies are a group of rare genetic disorders that affect the immune system. People with PIDs have an increased susceptibility to infections, which can be life-threatening if left untreated. There are over 400 different types of PIDs, each with its own set of symptoms and complications.
IPOPI's mission is to ensure that every person living with a PID has access to timely diagnosis, appropriate treatment, and high-quality care. The organisation works closely with healthcare professionals, policymakers, industry partners, patient groups, and other stakeholders to achieve this goal.
One of IPOPI's key activities is advocacy. The organisation advocates for policies that promote early diagnosis and treatment of PIDs. This includes advocating for newborn screening programs in countries where they do not exist yet. IPOPI also advocates for better access to treatments such as immunoglobulin replacement therapy (IRT) which can help prevent infections in people living with PIDs.
In addition to advocacy work, IPOPI provides support services for patients and their families. This includes educational resources on PIDs such as brochures on specific types of PIDs or webinars on various topics related to living with a PID. IPOPI also organises events such as patient meetings or scientific conferences where patients can meet each other or learn about the latest research developments in the field.
Another important aspect of IPOPI's work is raising awareness about primary immunodeficiencies among the general public as well as healthcare professionals. Many people are not aware that these conditions exist, and as a result, patients may go undiagnosed for years. IPOPI works to change this by organising awareness campaigns, participating in conferences and events, and collaborating with other organisations to spread the word about PIDs.
IPOPI is a truly international organisation with members from all over the world. The organisation has a network of national patient organisations (NPOs) that work together to improve the lives of people living with PIDs in their respective countries. IPOPI also collaborates with other international organisations such as the World Health Organization (WHO) or the European Medicines Agency (EMA) to ensure that PID patients' needs are taken into account at a global level.
In conclusion, IPOPI is an essential organisation for anyone living with primary immunodeficiencies or caring for someone who does. The organisation's advocacy work, support services, and awareness-raising activities have made a significant difference in improving the lives of PID patients worldwide. If you or someone you know is affected by PIDs, do not hesitate to reach out to IPOPI for help and support.