Happy faces of children one year after starting #cysticfibrosis drug #kaftrio as Daily Express highlights how #covid vaccine mRNA tech is now helping scientists look at ways to treat #genetic conditions like CF and #pku Cystic Fibrosis Trust Kate Learoyd NSPKU NHS England NHS England Media

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January morning just before another shower ☔️

These machines have been an important addition to how we can support CF sufferers at home, giving them the ability to adapt treatment regimes around their lives, and importantly having an immediate impact on breathing.

Supported Living and Ageing Well Strategy (SLAWS) Meeting. This is an important opportunity for GDA member charities, groups and individuals to have your say and input as P&R officers develop and push forward with this policy. disabilityalliance.org.gg/2023/05/suppor…

We asked our Hon Secretary & Director, Jane Wonnacott, why she volunteers. "I really enjoy offering my skills and experience to organisations and individuals who can benefit. I feel a great sense of purpose". #VolunteersWeek #thankyou

Our Social Policy Team - Mike Read, Catherine Hall & Rob Harnish have worked for many years using their specialist interests to respond to changes in States policies and provision, provide analysis of legislative changes and drive efficiencies in provision of services. 👏🙏🤩

A powerful example of how good our political system can be. - A diverse group of patients came together, engaged with politicians, who listened. - A requete & debate persuaded HSC to conduct a review. - Clear evidence, policy letter approved unamended. - 1000’s of patents benefit

Tonight is our next CF Live event, Gut Health. Looking at the connection between our minds, the gut and diet. Covering the gut-lung-axis, gut microbiota, GI symptoms, underlying challenges in the CF gut, diet, stress, anxiety, and breaking taboos. Sign up ow.ly/H1VR50OWViO

This 4 week course is free and begins next week.

Kindness Rails…your generosity allows us to #giftitforward! - Winter coats - Sportswear & equipment - Beachwear & beach kit - School uniform - ALL kids' clothes, toys, books & games All giftedto anyone living with challenges. Please keep donating to support our community!

We’ve launched a 'Random Acts of Kindness' initiative in our Market Sq shop. 🙌🏻 🌼 Nominate a friend 🌼 Drop slip into our Market Sq shop 🌼 We pick out our monthly winner 🌼 We get in touch to let you know your nominee has won a £15 gift voucher to spend in our shops!

The thought of having to battle again for proven life changing and extending treatment for CF children is heart wrenching. instagram.com/reel/CzWgvrhNT…

The uncertainty and distress this is causing CF patients and their families is heart breaking.

There’s one week left to apply to join the CareWatch panel. Email [email protected] for more information

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

On our website you can ‘Have Your Say’ directly to the panel on your experiences of Health and Social Care. You can find the form at CareWatch.gg

We’ve published final guidance recommending #CysticFibrosis treatments, Kaftrio, Symkevi, and Orkambi, following a new commercial deal between NHS England and Vertex. Find out more⤵️ nice.org.uk/guidance/ta988…

CF Guernsey have sought and received confirmation from the States Prescribing Advisor that treatments, Kaftrio, Symkevi, & Orkambi, following a new commercial deal between NHS England and Vertex, would continue to be available to local cfers on the same basis as the NHS.

Congratulations - on 15th September Sophie took on not just her first half marathon but her cystic fibrosis, finishing in a very respectable time. facebook.com/CysticFibrosis… cysticfibrosis.org.uk