World PI Week 2020

This year is the 10th Anniversary of World PI Week, celebrating ten years of success in raising awareness of primary immunodeficiency across the world. To recognise this milestone World PI Week will run for 10 weeks, from 22nd April to 1st July.

You can help us celebrate World PI Week

Do you want your voice to be heard? During this time of COVID-19 your voice and your story is more important than ever. This is your opportunity to be an advocate for primary immunodeficiencies.

IDFA is asking members to share your PI success stories which we can upload to social media and our website. Together we can continue to raise awareness of primary immunodeficiencies.

How can I help?

OPTION 1 – Create a video

Name your PI – let’s highlight types of PI and what it’s like living with PI

Create a short video (Less than 60 seconds). The video should include:

  • Name of your PI
  • Treatment you rely on to remain healthy
  • How your life is better because of diagnosis and treatment

Get creative, just keep it under 60 seconds. If you’re stuck for words here is a sample script.

Sample script:
“Hi, my name is John. I live with a primary immunodeficiency called X-linked Agammaglobulinemia also known as XLA. It affects my immune system which means I am susceptible to infections. There is no cure for XLA so I rely on regular plasma infusions to keep me healthy. Thanks to the generosity of plasma donors I can continue to work, visit my grandchildren and travel.”

Patient's First Name:
Name of Primary Immunodeficiency:
Option 1 - Check this box if your video doesn't have a URL (eg created by phone, mp4 etc). Please email it with your name and subject heading 'World PI Video' to: info@idfa.org.au
Option 2 - If you have created a video that has a URL (eg: Youtube, TikTok etc) paste the URL here:
Media Consent 1: I hereby consent to the collection and use of my personal images, story, video images, photographs, interviews, content about and direct and indirect quotes, and/or likeness of the Subject for the purpose of media relations, press coverage, publicity, entertainment, education, advertising, and other promotions via brochures, posters, picture murals, world wide web pages, press releases, videotapes, film and text and other media not specifically mentioned; I acknowledge these may be used by the Immune Deficiencies Foundation Australia and published on the IDFA website and in newsletter and publication as well as distributed to members. I understand that my personal information can viewed by anyone who accesses the IDFA website or publications or the general media and that my consent can be withdrawn at any time. *
Media Consent 2: Consent to disclosure of personal information by publishing on the IDFA website, newsletter and other publications. I am aware that by giving this consent, I am permitting personal information about (the above member) to be published, which can be viewed by anyone who accesses the IDFA website or other publications, and that if consent were withheld, this publication would not occur. I further understand that this consent may be withdrawn by me at any time, upon written notice. I give this consent voluntarily. *
Consent given by - Patient name OR Parent/Guardian name (for patient Under 18 years): *

OPTION 2 – Write your story

Share your PI success story (with a photo)

Your written story should be 2-3 short paragraphs and include:

  • Your name
  • Name of your PID
  • Age at diagnosis
  • How long did your diagnosis take?
  • Please provide a brief summary of your PI journey. This could be about diagnosis, treatment or something significant to your story. eg “My name’s John. I have a primary immunodeficiency called CVID. I lived with recurrent infections for 20 years until I was finally diagnosed. My treatment includes regular plasma infusions. Because of these infusions I can do things I enjoy like spending time with my family and travelling.”
  • How has your life improved since receiving a diagnosis
Patient's First Name:
Parent/Carers First Name (if applicable):
Name of Primary Immunodeficiency:
Age (of patient) at diagnosis:
How long did your diagnosis take (approx.):
Please provide a brief summary (150 words max.) of your PI journey. This could be about diagnosis, treatment or something significant to your story. eg “My name's John. I have a primary immunodeficiency called CVID. I lived with recurrent infections for 20 years until I was finally diagnosed. My treatment includes regular plasma infusions. Because of these infusions I can do things I enjoy like spending time with my family and travelling."
How has your life improved since your diagnosis? (150 words max.)
Upload your photo here: *
Media Consent 1: I hereby consent to the collection and use of my personal images, story, video images, photographs, interviews, content about and direct and indirect quotes, and/or likeness of the Subject for the purpose of media relations, press coverage, publicity, entertainment, education, advertising, and other promotions via brochures, posters, picture murals, world wide web pages, press releases, videotapes, film and text and other media not specifically mentioned; I acknowledge these may be used by the Immune Deficiencies Foundation Australia and published on the IDFA website and in newsletter and publication as well as distributed to members. I understand that my personal information can viewed by anyone who accesses the IDFA website or publications or the general media and that my consent can be withdrawn at any time. *
Media Consent 2: Consent to disclosure of personal information by publishing on the IDFA website, newsletter and other publications. I am aware that by giving this consent, I am permitting personal information about (the above member) to be published, which can be viewed by anyone who accesses the IDFA website or other publications, and that if consent were withheld, this publication would not occur. I further understand that this consent may be withdrawn by me at any time, upon written notice. I give this consent voluntarily. *
Consent given by - Patient name OR Parent/Guardian name (for patient Under 18 years): *

OPTION 3

Strike a Y! Have some fun and strike a pose

Enter the World PI Week photo competition. Take a photo of yourself striking a Y pose. Your photo should feature the colours blue and green (World PI Week colours).

Share your photo on social media using #PIctureAwareness and tag @theidfa (for Instagram) or @ImmuneDeficiencyFoundationAustralia (for Facebook)
Note: This competition is held by World PI Week not IDFA.

OPTION 4

Sign the global call to action

Show your support by signing the global call to action asking governments to improve understanding, diagnosis and treatment.
Sign the global call to action here: http://www.worldpiweek.org/get-involved/sign-petition/

Thank you for your support.

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