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.
➡️ ow.ly/JlwO50QwhLv

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! Dr Hilary Lloyd RN Natalie Cockfield Sue Pitts Nicola Howe

Weight gain following ETI modulators - not simply about energy intake?
authors.elsevier.com/sd/article/S15…
Cystic Fibrosis Trust Cystic Fibrosis Foundation LIMRLeeds European Cystic Fibrosis Society Cystic Fibrosis

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:

surveymonkey.co.uk/r/ZPDSSNM

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.

forms.gle/a2KSnVjmxCxgN6…

Any questions please contact Emma Dixon Emma DIXON

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).

Exciting opportunity 👀

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!

🔗 surveymonkey.co.uk/r/YourlifeandCF

Good luck team ☘️

Petitions that get shared more often, get more signatures. If you know someone with CF please share this every day this week. Thanks.

petition.parliament.uk/petitions/6337…

Wessex Adult CF Service @ChildrensUnit Blackpool Adult Cystic Fibrosis Service
Cystic Fibrosis PROSPER Study SaltyNotes Teesside Cystic Fibrosis Centre Nick Luck York Hull Adult CF Centre #cfaware

We also have a brilliant supportive social worker. I’m sure our families will agree Sara is amazing too

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.

➡️ ow.ly/IJle50NmNBK

Pleased to be able to share this nice piece of work from ManchesterCFResearch and Chris van der Gast team at MMU. Posting sputum back to the lab does not reduce our ability to culture CF bugs!
sciencedirect.com/science/articl…

Nutrition and Hydration week in CYPED, #anappleadaykeepsthedoctoraway #hydrationstation #NHW2023 Stephen McKenna Michael Souter Cathy Brammer Eoin McCarthy ALICE🦋.

It was nice to return to a face to face meeting of our annual “North East CF Club” tonight. It was great to see our regional colleagues and share experiences of the new era of CF care. Here is our very own Dr Duffy presenting on CF and Pregnancy 🤰🏻

Supporting free prescriptions for people with cystic fibrosis in England: join us?

CysticFibrosisPaedsTeamGNCH CFAdultNewcastle Teesside Cystic Fibrosis Centre

petition.parliament.uk/petitions/6337…

Please sign and support people with CF to be able to claim free prescriptions. Petition: Free prescriptions for all cystic fibrosis (CF) patients petition.parliament.uk/petitions/6337…

⁦Teesside Cystic Fibrosis Centre⁩ attending ⁦Vitalograph⁩ paediatric spirometry workshop. Meeting ARTP standards for lung function tests 💨

Delighted to share these early trial results on a new triple therapy for CF, because it doesn’t stop with kaftrio!
Once daily TC with similar/better efficacy than kaftrio. Now in phase 3!
Vertex Pharmaceuticals NIHR Manchester CRF Cystic Fibrosis Trust
sciencedirect.com/science/articl…