Following NICE's statement today, our Chief Executive, David Ramsden, has shared the following video, giving an update on where things stand.
You can read the statement from NICE here.
➡️ https://t.co/9177UdLvCx
@CFpaedsGNCH@Carol_A_Sharpe@GreatNorthCH@NewcastleHosps Enjoy your retirement, it is well deserved. You will be missed by the whole CF community for your passion and dedication. We will miss seeing you around at meetings. Have fun and keep in touch ❤️ xx
A huge congratulations to childrens outpatients JCUH for achieving a diamond accreditation 💎 Truely putting children, young people and their families at the heart of all they do! @hilarylloyd13 @NatalieCock29@spittsy@Nicola_Howe79
And here’s a link to the paper I presented last week at #ecfs2023.
Important to know that research into better treatments continues and doesn’t end with kaftrio.
#CysticFibrosisweek
Do you receive any hospital-prescribed medicines directly to your home? Have you experienced any problems?
With a recent review announced of a homecare delivery company, we want to hear about your experiences.
Click the link to fill in the survey:
https://t.co/9ovTntObH7
Paeds physios! Questionnaire on Infant/Baby PEP provision in UK and Ireland. Big variations in the way baby PEP is taught, the questionnaire aims to identify any consensus.
https://t.co/gK2wVftdxM
Any questions please contact Emma Dixon @EmmaDIX39217881
Many thanks!
Worth reflecting on #InternationalClinicalTrialsDay quite how far cf care has come, not just through modulators. It’s an amazing story, driven by clinical trials and by amazing people (patients and researchers).
We need your help to reach our survey response goal!
Here are three simple steps you can take to help out:
⭐ Fill in the survey.
⭐ Share the survey with your friends and family.
⭐ Retweet this post.
Make your voice heard today!
🔗 https://t.co/NOsHINfojU
Our CF Nurse and other team members are doing the coast to coast raising money for York Hull CF, through York and Scarborough Hospitals Charity. Good luck!!
Any donations will be most welcome!
York & Scarborough Hospitals Charity: Beat the Tide (https://t.co/FTNnWJAViq)
@SouthTees@STRIVEEvents looking forward to being part of the annual developmentally appropriate healthcare transition and health conference tomorrow at the Strive, JCUH #steestransition2023
We’re developing training resources to help CF centres improve exercise provision for people with #cysticfibrosis.
If you’re an adult with CF, or a healthcare professional, you can help by filling in our survey about exercise and CF.
➡️ https://t.co/UYCWgABKn1
Pleased to be able to share this nice piece of work from @Manchester_cf and @ChrisvanderGast team at MMU. Posting sputum back to the lab does not reduce our ability to culture CF bugs!
https://t.co/Qsto9lQ4lg