Quest For A Cure

Cystic Fibrosis patients or parents.- fighting for precision medicines to be made available. ultimately the cure!!!

[Quest For A Cure @CFQuestForCure]

For those that don’t do Facebook

#EnglandNeedsKaftrio4All
#KaftrioEqualityUk

[Vertex Pharmaceuticals @VertexPharma]

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

[Alison Strath @alisonstrath]

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- @jenni_minto & I very much valued the lived experienced shared, discussing the @NICEComms @online_his MTA draft guidance & listening to your aspirations for the #CF community - we will continue to engage with you

[Quest For A Cure @CFQuestForCure]

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

[Alison Strath @alisonstrath]

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- @jenni_minto & I very much valued the lived experienced shared, discussing the @NICEComms @online_his MTA draft guidance & listening to your aspirations for the #CF community - we will continue to engage with you

[MrsM 🏴󠁧󠁢󠁳󠁣󠁴󠁿🌼 @TraceyMillar19]

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

[Quest For A Cure @CFQuestForCure]

@jenni_minto & @alisonstrath thank you for taking the time to listen to us today 🙏🏻

[Quest For A Cure @CFQuestForCure]

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 We voiced our community concerns re draft guidance from NICE.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

[Quest For A Cure @CFQuestForCure]

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 We voiced our community concerns re draft guidance from NICE.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

[Marion Ferguson @Marion_Super]

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

[Marion Ferguson @Marion_Super]

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 Thanks also to all those who helped give evidence to @CfVoices for the response to the draft guidance @NICEComms

[Quest For A Cure @CFQuestForCure]

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

[Quest For A Cure @CFQuestForCure]

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.

[Quest For A Cure @CFQuestForCure]

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.

[BBC Scotland News @BBCScotlandNews]

Families in NHS funding plea for life-changing cystic fibrosis drug https://t.co/j2SVTu5bb1

[HEHTA University of Glasgow @UofGHEHTA]

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

[Oli Dillon @OliDillon]

Anyone wanting to keep up with CF Voices please join their Facebook page which is regularly updated

https://t.co/ZYh82l319X

[Oli Dillon @OliDillon]

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

[Kate Learoyd @PKUFamily]

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.

[Quest For A Cure @CFQuestForCure]

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

[Hayley Grafton @HayleyGrafton]

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...

[Maye Musk @mayamuskl]

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.

[Nikki Moore @horselady_nr]

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

[Maggieg @M44GYG]

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

[Quest For A Cure @CFQuestForCure]

@jackiebmsp @cftrust Thnx @jackiebmsp Many CF sufferers need 5000 calories a day -to stay well and not lose weight. The majority of them cannot absorb calories from fat and protein due to pancreatic insufficiency. Added to that is the burden of increased utility costs to operate medical equipment