For those that don’t do Facebook #EnglandNeedsKaftrio4All #KaftrioEqualityUk

News from #ECFS2024: We’ve announced #CFResearch data for our #CysticFibrosis medicines. Learn more: https://t.co/uc6JlH4ujW

@CFQuestForCure @jenni_minto It is always a privilege to meet colleagues from @CFQuestForCure - @jenni_minto & I very much valued the lived experienced shared, discussing the @NICEComms @online_his MTA draft guidance & listening to your aspirations for the #CF community - we will continue to engage with you

This means a lot to the #cysticfibrosis community, not only in Scotland but in the rest of the UK too.

@Marion_Super @CfVoices @NICEComms Thank you for your endless campaigning and support.

met with @jackiebmsp, & @scotgovhealth to discuss the @NICEComms (& SMC’s collaboration) for appraising Symkevi, Orkambi & Kaftrio. We voiced our community concerns re draft guidance from NICE. Reassuring to have discussion where we were engaged & our concerns taken on board.

Scottish campaign group for access to #cf drugs @CFQuestForCure are keen to clear up the inaccurate information in this report.

Thank you to everyone who came along to support us at the discussion. Thanks also to all those who helped give evidence to @CfVoices for the response to the draft guidance @NICEComms

Been busy with Comments @NICEComms guidance life saving drugs for #cf ! Thanks to @UofGHEHTA for inviting, @Jeane_F1 , Dr Gordon MacGregor & us to take part in a discussion. Thanks to Thomas for an emotive viewpoint. Discussing #cf drugs further with @jenni_minto @ScotParl

Let’s meet to chat and clear up some inaccuracies in this article. We are keen to put these poor parents’ minds at rest regarding access to #kaftrio in Scotland.

Let’s meet to chat and clear up some inaccuracies in this article. We are keen to put these poor parents’ minds at rest regarding access to #kaftrio in Scotland.

Want to know more about how decisions are made about which drugs should be available on our NHS? Join us at @UofGARC for a screening of 'The Price of Life,' and panel discussion on decision-making on access to cystic fibrosis drugs in Scotland. Register🎟️ https://t.co/olp18B94rv

Anyone wanting to keep up with CF Voices please join their Facebook page which is regularly updated https://t.co/ZYh82l319X

Urgent calling to our CF community, CF Voices Needs you! I can’t begin to tell u the difference #Kaftrio has made to my life & I want to be sure that future generations with CF r able to benefit in the same way. Pls join @CfVoices now to keep up with developments & announcements

It’s so interesting 🤔 to see that expensive medical interventions are being used for people who are healthy (but overweight) while people with the rare disease #pku only get the option of an extreme diet to treat their rare disease. The dietary interventions are very different.

This cannot and should not go on. It needs priority now. Enough is enough.

Nurses work 12hr shifts; sell their days off; use food banks; pay £1300 a year to park. And 40,000 have left their jobs in a year. Tory MPs sit for 150 days; get subsidised food; claim travel & energy on expenses; get free parking & £2,200 pay rises. Back the nurses please.

Last race of the year and he came first with a 53 second lead #proudmomma @cftrust @strawfie @CFAware @redbullracing @Max33Verstappen

@jackiebmsp @cftrust Thanks Jackie. A worrying time for all. Appreciate your continued support for those with CF.

.@cftrust's survey found 87% worried about the #costofliving. People with cystic fibrosis have higher food & energy bills as they need more calories to maintain a healthy weight & may need to power medical equipment. I support reducing the CF cost burden #ISupportPeopleWithCF

Can The Mail direct its interest in #HarryandMegan to what really matters, like the 7,000 terminally ill on UK #Transplant lists? Publicise that families need to discuss & note #OrganDonation wishes of each loved one. Sarah waiting 17mths for liver. ACUTE LACK OF ORGANS . RT