CF7: Starting secondary school, Registry report released, 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. Monitoring life-saving drugs

Last week, the European Medicines Agency granted a licence for Kaftrio, meaning that thousands of people with cystic fibrosis will soon be benefiting from this life-saving drug. Our Director of Data and Quality Improvement, Rebecca Cosgriff, wrote about the UK CF Registry’s role in securing ongoing access to this and other vital medicines. Read the blog.

2. Finding new ways to support adults with CF

As we develop new virtual activities and ways to bring the CF community together, we are asking adults with cystic fibrosis (CF) to tell us what they want and need. Jacqueline Ali, our Head of Information, Support and Programmes, has written a blog about the background to this and how to get involved.

3. Registry report presents a bigger, older and diverse CF population

Our 2019 UK Cystic Fibrosis Registry Report has now been published. Read the full report or take a look at our ‘at a glance’ document to see some of the stand-out statistics concerning people with CF in the last year. Find out more.

4. Friends saddle up for 1,110-mile cycle ride to raise £45k

Five friends have set off this week to cycle over 1,000 miles, visiting 18 county cricket grounds across England and Wales to raise thousands for the Cystic Fibrosis Trust and Cancer Research UK. Feeling inspired? Our new virtual cycle challenge is coming! Get in touch to register your interest for Ride for Research.

5. Making the move from primary to secondary school

Starting secondary school is a big change and can be a daunting time for families affected by cystic fibrosis. We’ve worked with parents, teachers and young people to create a new secondary school pack about the transition from primary to secondary education. Check it out.

6. Support the Trust while you shop online

For any of your online shopping, make sure you use AmazonSmile. You can help support the Trust with your Amazon purchases and make a real difference to people with cystic fibrosis. Just shop through and choose Cystic Fibrosis Trust.

7. Why are infection-causing bugs in the CF lungs like Minions?

Find out in our Research Blast article, where we look at antimicrobial resistance (AMR) and explain some of the research we’re funding to overcome it.

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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