CF7: Kaftrio deal for Wales, online 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. Wales announces deal for Kaftrio

On Wednesday, Welsh Health Minister, Vaughan Gething, announced that the Welsh Government has agreed a deal with Vertex Pharmaceuticals to give access to the triple combination therapy, Kaftrio, for people with CF living in Wales on the day the drug receives its European licence.

We continue to monitor progress in Scotland, Northern Ireland and the Crown Dependencies and it is our ambition for the drug to be available for everyone with CF who is eligible as soon as it is licensed, regardless of where they live in the UK. 

2. Young people show they are #MorethanCF

Over 20 young people with CF have already shared their achievements, creations and things that make them proud on our brand-new youth Instagram page as part of #MorethanCF. If you’re a young person with CF and want to celebrate what makes you #MorethanCF, find out how to get involved.

3. Join us for CF LIVE online events

Join us each month as we host a series of live online events, bringing together the CF Community and CF professionals to provide the latest updates on care and support in the world of cystic fibrosis. Our next event, ‘How your data makes a difference’, will be held on Wednesday 5 August. Find out more and register your interest.

4. Quarantine relay race raises much-needed funds

Taylor Vinters are supporting the Cystic Fibrosis Trust through a Corporate Partnership and put their staff to the test during lockdown with a 5k quarantine relay race challenge. Staff raised £500 in total – check out their amazing efforts. If you, a friend, or family member has a link to a company that may be able to support the Trust, find out how to get them involved.

5. Shielding updates for Scotland and Wales

Scotland’s First Minister, Nicola Sturgeon, has announced that further changes to shielding will occur from 24 July and shielding will be paused in Scotland from 1 August.

The Chief Medical Officer for Wales has confirmed that the shielding programme will be paused in Wales from 16 August. The food parcel scheme will also cease on these dates but, as in England, priority shopping slots will remain. Read more on shielding guidance.

6. Take part in our annual clinical trials survey

Our fourth annual survey is now open to collect your thoughts and experiences of clinical trials. Whether you have had the chance to take part in a clinical trial yet or not, please take 15 minutes to share your feedback with us

7. Isabel’s mask-making mission

Isabel Addison was inspired to make masks in memory of her son Ben, who died in 2019. Isabel has far exceeded her targets of 100 masks and £500. So far, she’s made 138 masks and raised over £1,500! You can contact Isabel to buy a mask via her Facebook page, and donations can be made here.

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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