Quest For A Cure

@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- @jenni_minto & I very much valued the lived experienced shared, discussing the @NICEComms @online_his MTA draft guidance & listening to your aspirations for the #CF community - we will continue to engage with you

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 We voiced our community concerns re draft guidance from NICE.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.

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.

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

Families in NHS funding plea for life-changing cystic fibrosis drug bbc.in/3uRZKLq

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

Ozempic, a diabetes miracle drug that has become an off-label appetite suppressant, is changing the definition of being thin — and what it takes to get there. @MatthewSchneier reports trib.al/2vLhvH2

I've unfortunately spent 12 hours today in an A&E corridor with my mum, thankfully all OK & we'll be out of here soon. But @RishiSunak the conditions we witnessed today are utterly unacceptable. The picture shows the corridor lined with chairs and dotted around are these hooks...