Press release: 6^th September 2016

Raise awareness about your cystic fibrosis issues on Worldwide CF Day

Since 2013 many countries have marked Worldwide CF Day on the 8th September.

As this offers a great opportunity to raise more awareness about global cystic fibrosis issues, the Breathe With Me Strawfie Challenge and YesOrkambi campaigns would like to encourage even more people to take part this year.

The organisers of the two campaigns would like people who have a link to cystic fibrosis from anywhere in the world, to post a selfie or short video on Twitter, Facebook, Instagram or any other social media site on Thursday  8^th September using the hashtag #WorldwideCFDay with the post.

The post (or multiple posts!) can be anything CF related, from showing someone undertaking their treatments or fundraising, to campaigning about cystic fibrosis issues.

Whatever you want to highlight – be imaginative – let’s get people talking about cystic fibrosis.

“One idea is simply to share the main CF issues that people are experiencing in their own countries” said Bernie Martin who is an active member of the #YesOrkambi campaign in Ireland.  “Currently the main focus in Ireland is to gain access to the ground-breaking new drug Orkambi.  But we are aware that elsewhere in the world the problems are very different.”

The organisers would also like to encourage anyone who supports the cystic fibrosis cause to share as many of these posts as possible on 8th September – from lots of different countries.

In that way, all the people fighting cystic fibrosis around the world will have a louder voice for at least one day.

Help us to show that ‘CF Lives Matter’ on Thursday 8^th September.

Remember to use #WorldwideCFDay.

Way to get involved in the fight against CF:

• Please sign this UK petition for Orkambi to be made available on the National Health Service
• Please sign this Irish petition for access to Orkambi
• Please sign Australian petition for Orkambi
• Please share this CF awareness video

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To find out more about the ‘Breathe With Me’ Strawfie Challenge visit www.breathewithme.info.

Patient Worthy and the CF Community welcomes spreading more and more awareness about life with CF. National CF Day is coming up on Sept 8^th.