CF Voices

Aiming to understand the impact of treatment with CF modulators on patient’s families and carers, to give them a voice within the healthcare system in England.

[CF BDA Specialist Group, CF Dietitians @bda_cf]

Update on Creon availability. 
50000 packs of Creon 25000 expected Thursday (18th ) and Friday 19th to be sent to the wholesalers. This is approximately ¼ of usual demand. 
Creon 10000 uncertain on delivery dates but hoping in the next couple of weeks.

[Cystic Fibrosis Trust @cftrust]

This week, NHS England have confirmed in a statement that commercial negotiations for the modulator appraisal have started and are on-track, as the process continues. (1/3)

[CF STORM @cfstormstudy]

Only 99 patients left to recruit onto the study✨a BIG thank you👏 to all of the sites and people with CF involved in making this research possible!! We're almost there... @cftrust @NIHRresearch @DaviesGwyneth @livuni_LCTC

[Cystic Fibrosis Trust @cftrust]

Did you know you can take part in a clinical trial from home? Check out two new trials that you can take part in remotely:

💛 GRAMPUS-CF: Understanding gut symptoms in people with CF.
💛 YOGA-CF: Investigating the effects of yoga for people with CF.

🔗 https://t.co/D75twkB5gd

[Cystic Fibrosis Trust @cftrust]

Following NICE's statement today, our Chief Executive, David Ramsden, has shared the following video, giving an update on where things stand.

You can read the statement from NICE here.
➡️ https://t.co/9177UdLvCx

[CF Voices @CfVoices]

Statement just received from @NICEComms giving update on appraisal of #cysticfibrosis modulators:

[MAGNIFY SRC @magnifysrc]

Lung MRI has the potential to help in cystic fibrosis care but we need your help in understanding how this might work. Please complete our survey and share your views: https://t.co/PgikxQSRZF #MRI #CysticFibrosis

[Cystic Fibrosis Trust @cftrust]

Following today's update from NICE, our Chief Executive, David Ramsden, has shared this statement.

[CF Voices @CfVoices]

We participated at NICE Committee meeting today & represented community views. Thank you to all who contributed. This was the latest stage in a process, the next steps of which will be communicated next week (nb it will not be a decision). We'll share statements as they are made

[Cystic Fibrosis Trust @cftrust]

Today our Chief Executive, David Ramsden, shares a few words about what's happening with the NICE process.

We will continue to keep you updated at each stage and let the CF community know when there are calls to action to get involved.

[CF Voices @CfVoices]

@Marion_Super @NICEComms Well done on your excellent advocacy

[CF Voices @CfVoices]

Thanks to everyone who contributed to our online form, which gathered comments representing 177 families living with CF, which will form part of our submission. Don't miss the deadline for individual comments via NICE website: tomorrow Friday 24th Nov 5pm https://t.co/Gh9zN0b1AI

[_laurenclayton_ @laurenclayton__]

Are you living with CF and interested in participating in our latest research study at the University of Portsmouth?

We are investigating how individuals with CF respond to exercise in the heat?

Please contact us for more information
#cysticfibrosis #research #CFWarriors

[CF Voices @CfVoices]

We also explain how to submit an individual submission (deadline 5pm 24th Nov) & next stages in our Facebook group. We'll be posting some tips/references you may want to include in submissions tonight

[CF Voices @CfVoices]

Can you provide some lived experience of #cysticfibrosis for NICE Committee consultation of modulator drugs, incl #Kaftrio? Join our Facebook group CF Voices to have your say via our stakeholder submission. Patients are welcome as well as carers/family. Deadline midnight Mon 20th

[Jenny Agutter News @4JennyAgutter]

anyone affected by CF please note the deadline for NICE submission is 24 Nov - but you can also go via CF voices whose deadline is midnight TONIGHT.
you will find really helpful information regarding the assessment by NICE here:
Facebook: https://t.co/XJv5kjNBSO or @CfVoices

[Marion Fellows @marionfellows]

A new research project from Cystic Fibrosis Voices is studying the effects of CFTR, but they need CF patients & carers to fill in a survey about the impact of CF on their lives. Want to help? Visit their FB page or email [email protected] for the survey⬇️

https://t.co/BKQDWkHeK3

[Strawfie Challenge @strawfie]

@Guatemalagirl @CfVoices