CF7: Preparing for the end of shielding, Kaftrio news, 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. Northern Ireland strikes deal for Kaftrio

Northern Ireland has joined England and Wales in securing a deal for access to life-saving medication Kaftrio on the day the drug receives its European licence. Find out more.

2. Advice for people worried about coming out of shielding

Across the UK, people with CF and their families are preparing for shielding to be paused. For some, this brings challenging decisions about levels of risk in resuming normal activities. We heard from two CF psychologists with their top tips on handling uncertainty and assessing risk.

3. Win big and support people with CF

Help support people with CF by playing our Summer Raffle and be in with a chance of winning £2,000! Tickets cost only £1 each: you can purchase them online. Every ticket helps us fight for a life unlimited for everyone affected by cystic fibrosis. There’s only a few more weeks to purchase your tickets. Thank you, and good luck!

4. What do local lockdowns mean for people shielding?

As the government in England announced new lockdown restrictions in specific local areas, we have added information to our website about what this means for people who have been shielding

5. No one should have to choose between their job and their health

We have joined forces with other charities in a letter asking Chancellor, Rishi Sunak, to support people who may not feel safe enough to return to their workplace when shielding ends.

6. Join our virtual Running Festival

Coronavirus may have cancelled our usual events, but that hasn’t stopped our Team CF runners. This September, join us for our first ever virtual Running Festival and help us raise vital funds to fight cystic fibrosis.

7. Upcoming event: ‘How your data makes a difference’

Our Registry Team work closely with clinical teams to monitor COVID-19 in people with cystic fibrosis across the UK. You can find the latest stats here. If you’d like to find out more about the Registry’s work then register for our CF LIVE event ‘How your data makes a difference’ taking place next Wednesday.

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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