CF7: 7 things you may have missed from the Cystic Fibrosis Trust this week

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Welcome to CF7. Each Friday we’ll 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. Our response to the Government’s COVID-19 recovery strategy 

On Monday, the Government released its COVID-19 recover strategy and we’ve summarised the key points it includes about people shielding. Since then the Government has received some further clarifications, and we are continuing to work through them as we know many of you are still waiting on answers to vital questions. You can hear an update from our Chief Executive, David Ramsden, on the work we are doing.

2. CF Week: we want your stories 

This year’s CF Week will take place from 15–21 June. Find out how you can get involved by sharing your story of balancing life with CF with the day-to-day stuff like family commitments and holding down a job. Also why not consider throwing a Big Yellow Party for Wear Yellow Day on 19 June?

3. 2.6 Challenge success

Thank you to everyone who took part in the 2.6 Challenge to support the Trust – including the 150+ staff from TeacherActive who walked or ran a total of 2,260,000 steps, raising over £2,000. 

4. Blog: Staying positive and beating COVID-19 despite CF

Nikita shares her experience of being diagnosed with COVID-19, her recovery and the resilience of people with cystic fibrosis. Read her story.

5. Evidence submitted to NICE appraisal

We have submitted evidence to the NICE appraisal of the triple combination therapy (also called Trikafta) about what it is like to live with cystic fibrosis and why access to the drug is so important. 

6. Statistics on COVID-19 in people with CF

Our Registry team is working closely with clinical teams to monitor COVID-19 in people with CF across the UK. Each week we will publish the current numbers for people with CF diagnosed with COVID-19 reported to the UK CF Registry.

7. Practical tips from a CF social worker

We spoke to Fiona Dowdall, CF specialist social worker on behalf of the UK Psychosocial Professions in CF, about how to get help with government parcels, financial grants, employment letters and medication delivery. Watch the video.

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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