Get involved with Rare Disease Day for IPF!

Help us raise awareness of pulmonary fibrosis

Action for Pulmonary Fibrosis > Get involved with Rare Disease Day for IPF!

On Rare Disease Day, 28 February, we would love you to get involved and show your support for IPF on social media!

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

We want you to help us raise as much awareness of the devastating lung disease pulmonary fibrosis across social media.

How can you get involved?

We’ve created a temporary frame for you to put on top your existing profile picture on Twitter and Facebook to show your support for IPF on Rare Disease Day.

Please support our Twibbon campaign by clicking on our campaign link here 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!

Facebook tip:

When you click ‘Add Twibbon to Facebook’ your new profile picture will be added to a new album called ‘Twibbon Photos’ and a message of support will be published to your wall if you have chosen to do so. You then need to click on your existing profile picture and set the new picture from your album. There is an option to make the change temporary for a certain length of time.

Twitter tip:

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 help support #RareDiseaseDayIPF , add a #Twibbon now!

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!

What should you post on social media about IPF on Rare Disease Day?

Here is a selection of pre-written tweets (that are all exactly at or within the tweet character limit) you can post on Rare Disease Day to help raise awareness of IPF and Action for Pulmonary Fibrosis.


#IPF kills 5,000 people in the UK every year. There is no cure @actionpfcharity #rarediseasedayIPF #charitytuesday

Pulmonary Fibrosis is fatal. It is a scarring disease which affects the lungs & forms scar tissue within the lungs #rarediseasedayIPF #IPF

The cause of #IPF is unknown (idiopathic) & more than half of sufferers die within three and five years of diagnosis #rarediseasedayIPF

It is estimated that more than 30,000 people in the UK are affected by #IPF #rarediseasedayIPF #charitytuesday

The charity @ActionPFcharity put patients first,set up support groups & raise awareness of #rarediseasedayIPF Donate

There are 40 support groups in the UK dedicated to supporting patients&families @actionpfcharity  #rarediseasedayIPF

Please fundraise for @ActionPFcharity to raise much needed funds for research #IPF #rarediseasedayIPF

Please donate to @ActionPFcharity funds are needed for support groups,raising awareness&research #rarediseasedayIPF

Thank you for your support.