World PI Week 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.
Through events and activities promoting the warning signs of PI, the global PI community can unite to bring about positive changes in healthcare systems and practices around the world in support of people living with PI.
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 recognise 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 centre 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 might you be able to undertake to help promote this important awareness week? Some ideas are :
- Invite a member of your local IDF or similar consumer group to your clinic to promote their work and raise awareness
- Offer your colleagues (who work in other areas) an informal teaching session on PI
- liaise with your public relations department to invite local media for an interview with you, your colleagues or perhaps a patient
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