CF7: Easy recipe ideas, letter to Government calling for clearer shielding guidance, 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. This is a new blog that we are trying out so we’d love to hear your thoughts.

1. UK CF Registry's response to COVID-19

Using data to understand health has never been more important than during this global coronavirus (COVID-19) pandemic. The UK Cystic Fibrosis Registry has moved quickly in its response to COVID-19 with a helpline to make it easier for clinical teams to report data, weekly reporting of statistics and a global collaboration to gather data on COVID-19 in cystic fibrosis. Find out more

2. Cystic Fibrosis Trust-funded researchers elected to prestigious society  

Cystic fibrosis researchers Professors Stuart Elborn and Ludovic Vallier have been elected to become Fellows of the Academy of Medical Sciences. The Fellows are an elite group of researchers recognised for their exceptional contribution to advancing biomedical science. Read more about the professors and their research. 

3. Updated statistics on cases of COVID-19 in people with CF

Each week we publish the current numbers for people with CF diagnosed with COVID-19 reported to the UK CF Registry. The numbers in the UK are too low to draw conclusions about risk factors or outcomes associated with COVID-19 in cystic fibrosis. We are collaborating globally to learn as much as possible, as quickly as possible. 

4. Easy and delicious recipes ideas

We've been working with some fantastic chefs, who have CF, on some easy recipes that you can make from the contents of your cupboard or even taking inspiration from the government food packages. Check them out on Instagram and share your kitchen creations with the hashtag #CFChefs.

5. Charities urge the Government to give further guidance for people shielding 

The Cystic Fibrosis Trust has co-signed a letter to the Government with Macmillan and a number of other charities calling for clearer guidance on shielding due to health conditions and what the future may hold as restrictions are eased. 

6. Delay to NICE appraisal for triple combination therapy 

On Tuesday, we were informed about a delay to the NICE Appraisal for the triple combination therapy (known as Trikafta in the US). We are asking Vertex for a full explanation and to see the steps they are taking to ensure speedy access to the drug once licensed. To keep up to date on all campaigning news, including access to medicines, sign up to our monthly campaigner newsletter

7. 24-hour gaming fundraising challenge

Craig and Carl, two gamers with CF, started a gaming challenge today, playing Pro Evolution Soccer for 24 hours. Read about their challenge and get some tips on how to hold your own gaming fundraising event

If you’d like to give us feedback on this new blog, please get in touch by tagging us on Twitter and using #CF7.

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