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

Get involved with Rare Disease Day for IPF!

Today is Rare Disease Day 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 https://twibbon.com/support/rare-disease-day-ipf 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!

The Facebook profile function is not working due to an issue with Twibbon so we have created a picture for you to download and use as your Facebook profile picture for today which you can download here:

http://tinyurl.com/FBraredisease

Simply download and save then upload as your profile picture!

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! http://twibbon.com/support/rare-disease-day-ipf/twitter

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 https://www.justgiving.com/apf

There are 40 support groups in the UK dedicated to supporting patients&families @actionpfcharity http://www.actionpulmonaryfibrosis.org/find-a-support-group  #rarediseasedayIPF

Please fundraise for @ActionPFcharity to raise much needed funds for research #IPF http://www.actionpulmonaryfibrosis.org/fundraising #rarediseasedayIPF

Please donate to @ActionPFcharity funds are needed for support groups,raising awareness&research #rarediseasedayIPF https://www.justgiving.com/apf

Thank you for your support.

Sign up to receive our newsletter

Never miss our news—sign up to receive our quarterly newsletter and we'll keep you updated about any important announcements, new research and lots of fundraiser stories.