CF Voices

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CF Voices

CF Voices

@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 Katılım Kasım 2019
11 Takip Edilen144 Takipçiler
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CF BDA Specialist Group, CF Dietitians
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.
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Cystic Fibrosis Trust
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)
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CF STORM
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
GIF
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Cystic Fibrosis Trust
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. 🔗 ow.ly/40zs50QGcoE
Cystic Fibrosis Trust tweet media
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Cystic Fibrosis Trust
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. ➡️ ow.ly/JlwO50QwhLv
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Cystic Fibrosis Trust
Cystic Fibrosis Trust@cftrust·
Following today's update from NICE, our Chief Executive, David Ramsden, has shared this statement.
Cystic Fibrosis Trust tweet media
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CF Voices
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
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Cystic Fibrosis Trust
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.
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Marion Ferguson
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

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CF Voices
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 nice.org.uk/guidance/indev…
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_laurenclayton_
_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
_laurenclayton_ tweet media
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CF Voices
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
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CF Voices
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
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Jenny Agutter News
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: facebook.com/CFVoices or @CfVoices
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Marion Fellows
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 info@cfvoices.org for the survey⬇️ facebook.com/groups/CFVoice…
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

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@cftrust @NIHRresearch @DaviesGwyneth @livuni_LCTC @NICEComms @Marion_Super @elonmusk @BarackObama