IPF World Week is a global awareness raising week (this year September 16 – 24) where the entire IPF community come together to make a difference to all those who are affected by the devastating lung disease Idiopathic Pulmonary Fibrosis.
IPF World Week was created in 2012 as an initiative to inform people around the globe that Idiopathic Pulmonary Fibrosis (IPF) is a rare and poorly understood chronic and ultimately fatal lung disease. Each year, around 35,000 people in Europe are newly diagnosed with IPF, with this number likely to increase in the future.
Some key facts about IPF
- IPF kills 5,000 people in the UK every year
- The cause is unknown (idiopathic)
- Life expectancy is often worse than for lung cancer with more than half of sufferers dying within 3 and 5 years of diagnosis
- The condition is characterised by a build-up of scar tissue in the lungs leading to shortness of breath and eventual respiratory failure
What have we got planned?
Action for Pulmonary Fibrosis have a full week of topics and events for you to look out for starting with the launch of IPF World Week at our Voice of the Patient day on Saturday 16th September. We will be making an exciting research announcement on Sunday and the following week will be taking part in the global campaign Listen for the Sounds of IPF to fight for early diagnosis of IPF, alongside the rest of the European Idiopathic Pulmonary Fibrosis and Related Disorder Federation (EU-IPFF).
What can you do to help?
If you are holding an event make sure you share your wonderful pictures on social media using the hashtags #UNITE4IPF #IPFWEEK. If it’s on Twitter, be sure to include our handle @actionPFcharity somewhere in the tweet.
Help spread the word on social media – get creative with Facebook frame and camera effects!
Simply go to your profile picture and click “update profile picture” then click on Add Frame. Find our frame by entering the search term “IPF Week”, then select, scale to size and save!
If you’re feeling adventurous then you can also use the frame whilst taking a short video of yourself! You can talk about IPF Week, why you are supporting it and ask people to get involved and share it.
The video feature can only be used on the Facebook app on your phone. Open the app and tap on the camera icon in the top left (or swipe right). Tap the magic wand icon in the bottom left then the frame icon on the bottom right (stick with it almost there!). Then scroll through the frames where you should see the #UNITE4IPF frame. Take your video then save or share!
Add Twitter frame!
We’ve created a temporary Twibbon that you can use for your profile picture on Twitter to help you shout about IPF and raise awareness.
Please support us by clicking on our campaign link here https://twibbon.com/Support/show-your-support-ipfweek and upload your temporary Twibbon (don’t worry you can easily change it back to the original!)! Make sure you include a message of support!
A simple process – once you’ve clicked “add Twibbon to Twitter” your profile picture will be overlaid with the Twibbon and a support Tweet will be posted on your behalf saying: Please support #UNITE4IPF in IPF Week, add a #Twibbon now! http://twibbon.com/support/show-your-support-ipfweek/twitter for @actionpfcharity
Please note: make sure you have got your original Twitter profile picture saved on your computer as you’ll need this to replace the temporary one when you want to revert back!