@yorkhullcf profile picture
York Hull Adult CF Centre @yorkhullcf

Specialist Cystic Fibrosis centre covering the York and Hull region. Enthusiastic about excellent local care.

Joined October 2018
  • Tweets 616
  • Following 303
  • Followers 401
179 Photos and videos
In relation to the below post re Creon supply shortages. Please contact your CF team if you are afected by the situation, or you need any help or advice. Tel 01904 725601- York 01482 622495- Hull Text 07816 330 902- York 07471 978 990- Hull
Cystic Fibrosis Trust@cftrust
20 Aug 2024
While we continue to push for short and long term solutions to the ongoing problems with supply of PERT (Creon), given the huge impact this is having on your lives we wanted to make sure you know how we can help. (1/4)
How we can help if you are struggling to access Creon: - we can give you support to discuss adjustments at work or in education to help when managing difficult symptoms - we can help with financial support if you’re struggling with extra costs travelling to hospitals, pharmacies or taking time off work - we can make sure you've got the most up to date information

ALT How we can help if you are struggling to access Creon: - we can give you support to discuss adjustments at work or in education to help when managing difficult symptoms - we can help with financial support if you’re struggling with extra costs travelling to hospitals, pharmacies or taking time off work - we can make sure you've got the most up to date information

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York Hull Adult CF Centre retweeted
Cystic Fibrosis Trust@cftrust
7 Jul 2024
"It can be scary and depressing when you have CF so I hope my story can show that some people with CF can live a long, happy and fulfilling life." Paul, who is seventy and has #cysticfibrosis, shares his story on our website. ➡️ ow.ly/PMAH50SvTr6
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NICE approve permanent access to life changing cystic fibrosis drugs cysticfibrosis.org.uk/news/n…

NICE approve permanent access to life changing cystic fibrosis drugs

The National Institute for Health and Care Excellence (NICE) have today (20 June) given approval for the life changing cystic fibrosis (CF) modulator drugs – Kaftrio, Symkevi and Orkambi - to be made...

cysticfibrosis.org.uk
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Check out Ad's new hairstyle following Big Shave to raise funds for CF Trust. Just giving fundrising page is still open if you would like to donate! Adrian Moss is fundraising for Cystic Fibrosis Trust (justgiving.com) #cftrust
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#cysticfibrosis #cftrust
York Hull Adult CF Centre@yorkhullcf
1 May 2024
Lovely Adrian is going to 'chop his very long hair off' on his BD, 15th May to raise awarness of Cystic Fibrosis and raise funds for CF Trust Cystic Fibrosis Trust!! justgiving.com/page/adrian-m…
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York Hull Adult CF Centre retweeted
York Hull Adult CF Centre@yorkhullcf
1 May 2024
Lovely Adrian is going to 'chop his very long hair off' on his BD, 15th May to raise awarness of Cystic Fibrosis and raise funds for CF Trust Cystic Fibrosis Trust!! justgiving.com/page/adrian-m…

Adrian's fundraiser for Cystic Fibrosis Trust

Help Adrian Moss raise money to support Cystic Fibrosis Trust

justgiving.com
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York Hull Adult CF Centre retweeted
Cystic Fibrosis Trust@cftrust
2 May 2024
Our free body image booklet explores body image issues people with CF have told us they can struggle with, and provides support and advice for dealing with these issues. It also explores some of the positive aspects of body image and cystic fibrosis. ow.ly/5RcH50RuPEW
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Work Forwards is CF Trust's programme of free tailored careers information, advice, and guidance for people with CF and their loved ones. Self-employment: the importance of business planning Tuesday 21 May, 12.30-1.30pm, online webinar cysticfibrosis.org.uk/life-w…

Work Forwards

Empowering people with cystic fibrosis to fulfil their career dreams and aspirations.

cysticfibrosis.org.uk
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Work Forwards is CF Trust's programme of free tailored careers information, advice, and guidance for people with CF and their loved ones. Know your value! Cystic fibrosis, work and transferable skills webinar Wednesday 1 May, 12.30 – 1.30pm, online cysticfibrosis.org.uk/life-w…

Work Forwards

Empowering people with cystic fibrosis to fulfil their career dreams and aspirations.

cysticfibrosis.org.uk
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York Hull Adult CF Centre retweeted
Cystic Fibrosis Trust@cftrust
5 Mar 2024
This week, NHS England have confirmed in a statement that commercial negotiations for the modulator appraisal have started and are on-track, as the process continues. (1/3)
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York Hull Adult CF Centre retweeted
Cystic Fibrosis Trust@cftrust
21 Mar 2024
People with #cysticfibrosis are living longer than ever. However, living longer with CF can bring its own challenges. We hosted a workshop bringing together researchers, healthcare professionals, and the CF community making this a research priority. ow.ly/xRkn50QXMFa
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Happy Easter!!! Just a quick reminder : OUT OF HOURS CF CARE over Easter period York Ring Hospital Switch Board on 01904 631 313 Ask for Operator Request CF On-call Hull Ring Hull Hospital Switch Board on 01482 875 875 Request CF On-call

ALT He Is Risen Praise Him GIF
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Work Forwards CF Trust's programme Empowering people with cystic fibrosis to fulfill their career dreams and aspirations More info below cysticfibrosis.org.uk/life-w…

Work Forwards

Empowering people with cystic fibrosis to fulfil their career dreams and aspirations.

cysticfibrosis.org.uk
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York Hull Adult CF Centre retweeted
Cystic Fibrosis Trust@cftrust
23 Feb 2023
It's #HelplinesAwarenessDay, a great opportunity to remind you that for anyone looking for information or support with any aspect of #cysticfibrosis, our friendly Helpline team are here for you. ☎️ Plus, you can now reach us via WhatsApp!
Chat with our Helpline. Call 0300 373 1000, Monday–Friday 10am–4pm. Email: helpline@cysticfibrosis.org.uk. Chat with us on Facebook, Twitter or Instagram. Message us on WhatsApp on 07361 582053.

ALT Chat with our Helpline. Call 0300 373 1000, Monday–Friday 10am–4pm. Email: helpline@cysticfibrosis.org.uk. Chat with us on Facebook, Twitter or Instagram. Message us on WhatsApp on 07361 582053.

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York Hull Adult CF Centre retweeted
Dan Beever@Dan_Beever
1 Mar 2024
Very grateful to those that have completed my survey or shared it - it will close in a couple of weeks so any further help in boosting response numbers would be much appreciated. Particularly keen to hear from more people with CF & carers! 🙏🏻 #CysticFibrosis #MRI
MAGNIFY SRC@magnifysrc
1 Mar 2024
Do you have cystic fibrosis? Or care for those that do? Please share your views on lung MRI in our survey: forms.office.com/e/zvqaUWT4Z… So far, 80% of our responses have come from healthcare staff – can you help boost our responses from people with CF & carers? #MRI #CysticFibrosis
Do you have cystic fibrosis or care for someone who does? Are you a CF healthcare professional? Are you interested in helping develop new technologies for the benefit of people with CF? If so, we need your help! The MAGNIFY Strategic Research Centre is funded by the CF Trust to explore the use of lung magnetic resonance imaging (MRI) in CF care. Lung MRI can help in the monitoring and management of CF, as well as in testing new inhaled treatments. Please click the link in this post to complete our survey and provide your opinions and experience of lung MRI. Your contribution will help to support the use of the technology in CF. Please contact Dan Beever, PhD student, for further information: daniel.beever@nottingham.ac.uk.

ALT Do you have cystic fibrosis or care for someone who does? Are you a CF healthcare professional? Are you interested in helping develop new technologies for the benefit of people with CF? If so, we need your help! The MAGNIFY Strategic Research Centre is funded by the CF Trust to explore the use of lung magnetic resonance imaging (MRI) in CF care. Lung MRI can help in the monitoring and management of CF, as well as in testing new inhaled treatments. Please click the link in this post to complete our survey and provide your opinions and experience of lung MRI. Your contribution will help to support the use of the technology in CF. Please contact Dan Beever, PhD student, for further information: daniel.beever@nottingham.ac.uk.

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Cystic Fibrosis Care- Food Voucher Application Click below for more information yorkhullcf.org.uk/cf/informa…
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York Hull Adult CF Centre retweeted
Cystic Fibrosis Trust@cftrust
27 Feb 2024
Are you yet to fill out the Your Life and CF Survey? We're particularly looking for people in #Scotland, #Wales and #Northenireland to complete the survey and obtain vital information from across the UK. We'd love to hear from you. ➡️ ow.ly/JaWN50QHNXX
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York Hull Adult CF Centre retweeted
Cystic Fibrosis Trust@cftrust
15 Feb 2024
This Tuesday 20 February marks the official 60th anniversary of Cystic Fibrosis Trust and we are very pleased to share that a number of landmarks across the UK have agreed to light up in yellow to celebrate with us! Check out our list of landmarks! ⭐ ow.ly/fUzy50QC7nP
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