CF7: Latest developments on Kaftrio, upcoming events, and more

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Welcome to CF7. Each Friday we share seven pieces of cystic fibrosis (CF) news, resources and community stories from the week. 

1. Employment information updated ahead of changes to shielding

We’ve updated our website with comprehensive information about your employment rights as shielding changes, whether you are someone with CF or whether you live with someone who is shielding.  

2. Shielding guidance for children in Scotland 

The Scottish Government has announced they will follow guidance that suggests many children and young people may no longer need to shield. Families in Scotland will be contacted by their CF team for an individual discussion about this in the coming weeks. Find out more.   

3. Planned reopening of schools in England 

The Government in England published detailed guidance for schools on the planned full reopening in the Autumn term. We have updated our information to explain what this means for the CF community and how to ensure children get the support they need.

4. Licensing the triple therapy: what the latest developments mean for you 

Following the announcements this week by NHS England and the European Medicines Agency (EMA) on access to Kaftrio, Dr Keith Brownlee, Director of Policy, Programmes and Support, has written a blog about what this means for the CF community in the UK, what’s next and how you can continue to support our campaign for access to medicines. 

5. Thank you for supporting our emergency appeal 

The Trust’s Wear Yellow Day and Big Yellow Party have so far raised £49,186.73. All funds go towards our emergency appeal, which is helping us support those with CF and their families during this uncertain time. Learn more about our emergency appeal and other ways to fundraise.       

6. Join us for live community event on 8 July 

We are holding a live community event on Zoom next Wednesday 8 July at midday. Join David Ramsden, our Chief Executive, and Dr Keith Brownlee, Director of Policy, Programmes and Support, as they provide the latest updates on Kaftrio and take your questions. Register now

7. Online activities for young people with CF 

We’ve added more fun activities to our online programme for young people with CF to support them while they are shielding. There’s lots on offer so take a look at our youth page to find out more. 

We are facing a substantial drop in our fundraising income, at a time when we're seeing an enormous increase in demand for our services. Please consider making a donation to help us continue our work to support people with cystic fibrosis. 

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