Your donation will make a difference:
Cystic Fibrosis Trust
Forum
  • Home
  • /
  • Home
  • /
  • News
  • /
  • CF7 Scotland Kaftrio deal makes it four

CF7: Scotland Kaftrio deal makes it four, new live events, and a licence to grill…

Welcome to CF7. Each Friday we share seven pieces of cystic fibrosis (CF) news, resources and community stories from the week.

1. Scotland deal for Kaftrio means access across the UK nations

Earlier this week, the Scottish Government announced a deal with Vertex Pharmaceuticals for access to Kaftrio on the day it receives its European licence. This follows similar deals for Northern Ireland, Wales and England. Find out more.

black doodle of a hot dog2. Buns, bangers… Bubble BBQ

As shielding comes to an end, make it a safe and sizzling summer with a fundraising Bubble BBQ. Set a date, grab our fundraising pack and invite your friends and family to celebrate while helping us support everyone affected by cystic fibrosis.

3. How clinical trials can unlock more life-saving drugs

While the Kaftrio deals are exciting news for the CF community, not everyone will be able to benefit from the current precision medicines. Our Involvement Manager, Lorna Allen, explains how clinical trials could hold the key to making sure no one is left behind. Read her blog.

4. Did you catch this week’s CF LIVE on how your data makes a difference?

On Wednesday we held an online event to explain how the UK CF Registry works, and how the data you provide can make all the difference to CF Care. If you missed it – you can play it back here.

doodle of a striped school tie5. Join our back to school special

As schools get set to reopen, join us on 19 August for a special CF LIVE on returning and settling back into education. Don’t miss our expert panel as they help to answer some of the questions you may have about going back to school and discuss what support is available. Register for this event.

6. Be inspired and get set for our running festival

Today the Virgin Money London Marathon announced it is going virtual – but you can get ahead of the pack with our first ever Running Festival this September! Be inspired by Steven, Donna and Callum who took on virtual running challenges over lockdown, with their tips on staying motivated and raising vital funds to fight cystic fibrosis.

7. Get to grips with GI issues in cystic fibrosis

Written by CF dietitians, ‘Gastrointestinal issues in CF’ is the latest factsheet in our suite of nutrition resources. It covers a range of gastrointestinal (GI) issues, and how to recognise and record symptoms and report them to your CF team. Download the factsheet or order hard copies via helpline@cysticfibrosis.org.uk.

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.