@CfVoices

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.

 UK
cfvoices.org
Joined November 2019
  • Tweets93
  • Following11
  • Followers143
37Media
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.
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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)
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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
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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. 🔗 ow.ly/40zs50QGcoE
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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. ➡️ ow.ly/JlwO50QwhLv
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Statement just received from @NICEComms giving update on appraisal of #cysticfibrosis modulators:
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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: forms.office.com/e/zvqaUWT4Z… #MRI #CysticFibrosis
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Following today's update from NICE, our Chief Executive, David Ramsden, has shared this statement.
A statement from David Ramsden, "The latest update from NICE confirms that no one will lose their current access to the modulator treatments and indicates that commercial negotiations between NHS England and Vertex are the likely next step. We are expecting another update at the end of January and are hopeful that all parties will now work swiftly to end the uncertainty for all of those who could benefit from these medicines in the future."

ALT A statement from David Ramsden, "The latest update from NICE confirms that no one will lose their current access to the modulator treatments and indicates that commercial negotiations between NHS England and Vertex are the likely next step. We are expecting another update at the end of January and are hopeful that all parties will now work swiftly to end the uncertainty for all of those who could benefit from these medicines in the future."

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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
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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.
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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 nice.org.uk/guidance/indevel…
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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
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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
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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
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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: facebook.com/CFVoices or @CfVoices

CF Voices

CF Voices. 685 followers. CF Voices aims to gather info to understand the impact of treatment with Cystic Fibrosis modulators.

facebook.com
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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⬇️ facebook.com/groups/CFVoices…
CF Voices@CfVoices19 Nov 2023
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
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Replying to @Guatemalagirl
@Guatemalagirl @CfVoices
Strawfie Challenge@strawfie18 Nov 2023
Adults with #cysticfibrosis & carers/parents of over 12's - The under 2's with CF need your help URGENTLY If you can answer any of the questions below for the NICE committee please email: [email protected] or message through their Facebook page: facebook.com/CFVoices/ Pls RT
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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
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