#OrkambiNow MARCH FOR #PrecisionMedicine Friday 22nd June CF Week Wear Yellow Day!! Follow below link for Itinerary and info👇👇👇👇 March with us and make your voice heard!! #DyingForADecision #endtheDEADlock facebook.com/events/4334303…

Help us with our next #questionCF survey on gastrointestinal symptoms. Tell us how CF effects your/your child’s tummy etc and what things can make it better or worse. Click here to take part & share when you’re done bit.ly/2sv0zXP thank you!

That moment when u break a new baseline lung function! I’ve been at 41% for last year after 2 bad infections (1 Flu) we thought that was my new baseline. I’ve just blown 49%....so thankful for Orkambi 5 years on, such a shame UK are still fighting Strawfie Challenge Fight4Orkambi

The only way to start your day 😂Costa Coffee #roughnight #babycino #mummylovesalatte

When the tills are down they can’t even accept my free coffee voucher... so it’s a ‘free free’ coffee this morning thank you McDonald's UK #bonus #goingtobemyluckyday 👌☀️

Members of our staff will be marching tomorrow in the London Pride Parade to show their support for LGBT+ inclusion and diversity! #pridematters

So Matt Hancock Tell me again how it would not be appropriate for you to intervene in the matter between the parties.. it clearly say’s otherwise in your job description 🤔 the CF community are also sorry you cannot be more directly helpful! #DoTheRightThing #OrkambiNow

Take 2 children with CF, child A is able to access meds that treat root cause of the disease. Child B is denied the chance, same disease different gene types 🤷‍♀️ 400 young people in UK Hv Kalydeko 4000 need #Orkambi that’s #genediscrimination pls sign & RT petition.parliament.uk/petitions/2316…

Woops. Discussing #LifeSavingDrugsNow can never be a waste of time ... express.co.uk/news/uk/110228…

Thank you to Matt Hancock for meeting with Carlie Pleasant - Motherhood vs Cystic Fibrosis 🫁 at King's College NHS yesterday. Please make sure you keep Carlie's faith in you and get a deal done. People with #cysticfibrosis need these #LifeSavingDrugsNow

instagram.com/p/B0G0pSPJHBS-…

-@janedaviescf @StuartElborn David Turner (gs65 on B S k y) Liam Mc Hugh Quest For A Cure Cystic Fibrosis Trust David Ramsden We need immediate access to #TrikaftaNext It won’t just happen so Vertex Pharmaceuticals NHS England NICE need to carry on negotiations We can’t wait even 1 day longer Chris Riches

Need to get in touch over the Christmas period? These are the times we’ll be here to answer your calls, emails and social media posts. Remember you can get our complaint processes started at any time by using our online form here ow.ly/R7ge30hob29

Every year is a gift for all of those affected by #cysticfibrosis. Give them the gift of hope this #Christmas and support our #research by donating today: cysticfibrosis.org.uk/christmas

WE HAVE NEARLY HIT 10K SIGNATURES IN LESS THAN 24HRS!!!! PLEASE SIGN, SHARE AND RETWEET #ukneedsorkambi #orkambinow #cyaticfibrosis #cfaware #fight4orkambi Cystic Fibrosis Trust Strawfie Challenge @BenMudgePT Josh Llewellyn-Jones OBE petition.parliament.uk/petitions/2094…

And the 100k mark is passed. A huge congratulations and thanks to all of those in the commuity who not only started this #OrkambiNow petion but have driven it to great success in such a rapid speed petition.parliament.uk/petitions/2094…

Good to be at #Carers APPG meeting. Really enjoyed hearing from Scott Corley who works at Financial Ombudsman Service and combines his job with caring responsibilities for his daughter who has CF. Also got an update on Carers Week 2018 (11-17 June).

Never seen this pic before. #keithandpaddypictureshow presents… instagram.com/p/BisJPnjgtJK/…

#makeastand x.com/pmholder1/stat…