World Primary Immunodeficiency Week 2017

World PI Week is a global campaign to raise awareness and improve diagnosis and treatment of primary immunodeficiencies (PIDs) using the slogan “Test. Diagnose.Treat”. It runs from the 22nd - 29th April 2017.

This is the week when patients, healthcare professionals, and patient groups call for increased awareness of PIDs. In a nutshell it's a wonderful chance to get primary immunodeficiency noticed and to make your voice heard!

This year World PI Week is focusing on ensuring access to life-saving immunoglobulin therapies for people affected by PID.

 

What you can do to get involved and help

1. Please tell us how important immunoglobulin therapy is to you, the difference it makes to your health, and your experience of having this treatment. If you need inspiration then take a look at what some of our members have contributed here

2. Tell your friends and family about PID. We are encouraging all our members to raise awareness of primary immunodeficiencies whilst raising money for PID UK during this time by hosting a coffee morning. You can download and edit our coffee morning poster here. We can support you with information leaflets, banners, balloons and collection tins. Please get in touch. 

3. Get PID on the world stage by adding your voice to the World PI Week campaign by signing their global petition.

4. Add your story and photo on the World PI Week website. You need only write about 60 words. You could describe how PI affects you and your wishes for the PID community such as more awareness, speedier diagnosis, more research, better treatments etc. Take a look at the stories already posted to get inspiration. Then please don't forget to share it with PID UK and friends on our Facebook and Twitter pages.

5. Print off the infographic on PI and ask your GP surgery to display the poster.

6. Print off a World PI Week poster and display it at work, your child's nursery, your immunology clinic, really anywhere you can think of to spread the word. Here are posters featuring a child and another featuring adults.

About PID

    One in 1200 people are suspected to live with a genetic PID that significantly affects their health. However lack of awareness means that globally between 70 to 90% of people affected remain undiagnosed, with their healthcare practitioners treating primary immune deficiency related infections as common flus. With early diagnosis, proper care and optimal treatment the disease is manageable and can save patients from lifelong disabilities, unnecessary vaccinations and lengthy hospital visits.  Detecting the disease early can improve patients’ conditions offering them all the opportunity to live full and rewarding lives.

    Key facts about PIDs

    • 6 million people worldwide affected
    • PIDs have no gender, age or or geographical  boundaries.
    • Close to 250 different forms of PID exist.
    • The correct diagnosis of PID begins with knowing the key warning signs. These include having severe, persistent, unusual, recurrent infections and a history of PID running in the family.

    Thank you for supporting World PI Week and PID UK.

    Posted April 2017