Rezultati pretraživanja
  1. 30 days ago Matt Hancock said yes to Orkambi & Symkevi. 30 days ago the CF battle of Britain was won, we now need to win the War on CF

  2. 3. velj

    This sounds encouraging... but ... was in the meeting? YOU MUST PARTICIPATE in these meetings to ensure that the people who can benefit from your AMAZING will have it available to them in a TIMELY MANNER!

  3. 3. velj
    Odgovor korisnicima

    Great to hear this, another important step along the way...

  4. 3. velj
    Odgovor korisnicima

    Interesting and glad to hear it was productive!!! Brilliant that there was a good attendance from the medical community! Thank u all ♥️

  5. 1. velj

    A day later than hoped but we’ve got our Teddy home. Still a bit sore but recovering well. We can test the Port-a-car in a few days.

  6. 1. velj
    Odgovor korisnicima i sljedećem broju korisnika:

    As always Paul, your support is invaluable. Thanks for replying to our community and I hope you’ll continue to work with us in our ongoing and continuing fight. 👊🏻👊🏻💛

  7. 1. velj
    Odgovor korisnicima i sljedećem broju korisnika:

    💕💪 Was a good meeting UK needs these "highly effective modulators" asap!

  8. 30. sij

    Some of our CysticFibrosis community campaigners fighting for the game changing at a meeting in today to discuss strategy & plans ahead of EMA licensing of this vital drug👊🏻 – mjesto: Cystic Fibrosis Trust

  9. 30. sij

    please meet with them to discuss the best way forward

  10. 30. sij
    Prikaži ovu nit
  11. 30. sij

    Come on uk people. Let’s fight for this Join campaign group on Facebook UK NEEDS 👊🏻👊🏻💛

  12. 30. sij

    this is my friend Karis. She desperately needs TRIKAFTA! Help to save her life. Help to stop her kids growing up without their amazing mum. You CAN do something!

  13. 29. sij

    Guess I'm following Jeremy Hunt again 🤣. Chair of the health and social care select committee.

  14. 29. sij

    Thanks Louise. It’s down to a great team at the from top to bottom who all want health justice for sufferers - as well as those with who desperately need

  15. 29. sij

    To every person who shared petitions, retweeted posts, attended events, donated to ...today is a huge day and it's thanks to *you*! You have no idea what this little box means to our family. Thank you. Here's to the next chapter 💛💛💛

  16. 29. sij
    Odgovor korisnicima i sljedećem broju korisnika:

    Courtney, that’s brilliant. Would be fab if you could share your story on our UK Needs Facebook page Also great that your hospital are being so supportive as many are not🤷‍♀️ ThankYou💛

  17. 28. sij
    Odgovor korisnicima

    That’s amazing Andrew!!! So happy for you and your family.

  18. 26. sij
    Odgovor korisnicima

    Come on For the life of Darren just get on the ☎️📞 NOW get the admin📝 ✅ deliver📦💊🚛🚶‍♂️🚁 Staff👨‍⚕️🩺👨‍⚕️are ready to help PLEASE hurry up🙏🏻 Surely nothing can be more important💛 . .

  19. 24. sij

    Checkout Mr independent doing his own nebs. Sadly this is a scene we do a minimum of four times a day. With scenes like this could be hugely minimised. Praying for .

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