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04/25/2022 “World Primary Immunodeficiency (PI) Week” By Kaylee McGrath

World PI Week is held globally on April 22nd – 29th. The awareness offers an opportunity to inform and educate health policy-makers, schools and families, and the general public about primary immunodeficiencies (PI) to drive the earliest possible diagnosis and optimal treatment.

What Is the Mission of World PI Week?

• Create a ‘global’ movement around PI and a central platform around which all local and national players can build

• Bring together, empower and engage all global stakeholders in the PI cause (patients, nurses, physicians, scientists, allied health professionals, and industry)

• Create and maintain a World PI Week ‘brand’ with a wealth of template materials which can be easily adapted to local needs e.g., activity ideas, press releases, letters to key decision makers, posters.

• Provide a central repository for World PI Week best practice including reports, case studies and material which showcases the impact of the day around the world and encourage all stakeholders to be active

• Stimulate international and national advocacy towards governments by providing grassroots ‘lobbying’ tool kits with necessary material and argumentation to encourage local campaigning to recognize PI as a priority worldwide

What Are the Objectives of World Pi Week?

• To drive recognition of primary immunodeficiencies (PI) as an increasingly important group of diseases

• To increase recognition of PI amongst the medical profession as well as parents, school teachers, day care center employees, researchers and nurses to increase the understanding of these diseases and promote early diagnosis

• To encourage health authorities to use existing awareness materials produced by JMF, IPOPI and other stakeholders to promote the timely diagnosis and treatment of people living with PI

• To promote the model of combining physician education and global awareness with the infrastructure to diagnose and treat PI worldwide

• To stimulate efforts to improve the recognition, diagnosis, treatment and quality of life of people with PI world-wide

What is Primary Immunodeficiencies (PI)?

• Primary immunodeficiencies are rare diseases which occur when a person’s immune system is absent or does not function properly

• When a defect in the immune system is inherited (carried through the genes), it is called primary immunodeficiency

• There are over 450 forms of Primary Immunodeficiency (PI or PID), ranging widely in severity.

• Primary Immunodeficiency often presents in the form of “common” infections, sometimes leading physicians to treat the infections while missing the underlying cause, allowing the infections to reoccur, and leaving the patient vulnerable to vital organ damage, physical disability, and even death

Early Testing and Diagnosis

• It is estimated that 10 million people worldwide are living with primary immunodeficiency

• 70-90% of people with primary immunodeficiencies are still undiagnosed worldwide

• A number of different signs and symptoms can help detect primary immunodeficiencies as they occur commonly in many types

• The most common are severe, persistent and/or recurring infections such as ear, sinus, or skin infections, as well as inflammation in the lungs, liver and intestines. Although it varies from individual to individual and from disorder to disorder, those signs can enable doctors to refer the patient for further medical examinations

• It is also important that family caregivers and the public are aware of symptoms to visit an immunologist in case of suspicion

Source of Information: Various Google Searches

Until Next Week, Stay Safe and Well!

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