jamie duckers retweetledi
The inspirational Sophie Pierce speaking at #ReseachWales24 on 'How Research Changed My Life' and sharing her personal experiences of the genetic condition cystic fibrosis.
@ResearchWales
@cftrust
@GeneticAll_UK
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jamie duckers
126 posts
jamie duckers retweetledi
The Registry team has released its data report, reflecting on rapid change in the CF landscape. Covering 11,148 people in the UK, excellent progress has been made, but perhaps equally important, indicating where gaps still exist and areas of improvement. ow.ly/tZGA50Qf559
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jamie duckers retweetledi
Great to meet with the Welsh First Minister yesterday to discuss CF care and innovation and to emphasise the importance of removing any uncertainty about access to life-changing medicines for all those who could benefit in the future as soon as possible.
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jamie duckers retweetledi
This year’s Registry report covers 11,148 people with CF in the UK, showing the continued excellent progress that's been made, but, perhaps equally as important, it indicates gaps still exist, shining a vital spotlight on areas that could be improved. ow.ly/NwlZ50PS15N
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jamie duckers retweetledi
@Nannon_Phillips sharing her expertise on shared-decision making at the @allwalescf conference today for conversations about reproduction and pre-conception in CF @cardiffmet
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jamie duckers retweetledi
I'm still looking for participants. I'd be so grateful if you could please share the poster or consider taking part. Feel free to contact me if you have any questions or would like more information.
Dr Mulongwe Mwelwa@MulongweMwelwa
Hi everyone, I'm conducting research for my dclinpsy thesis on the experiences of adults with Cystic Fibrosis unable to benefit from Kaftrio/Trikafta due to genetic factors. If you have questions or need more information, feel free to contact me. Thank you for your time.
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jamie duckers retweetledi
Would you like to come and join our Cystic Fibrosis team? We're advertising for a Youth Worker. cavuhb.nhs.wales/jobs/#!/job/UK…
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jamie duckers retweetledi
Come and join our MDT. Great opportunity to work as a CF dietician in the all wales adult CF centre. Feel free to spread the word.
cavuhb.nhs.wales/jobs/#!/job/UK…
@allwalescf
@addy_charlotte @cftrust @acpcf
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jamie duckers retweetledi
Do you have an interest in ageing research? If so, register your interest to help us better understand how we "manage an ageing population with cystic fibrosis", one of the top 10 research priorities for the CF community.
Cystic Fibrosis Trust@cftrust
Are you a researcher, clinician, or CF professional with an interest or expertise in CF and ageing? Please register your interest in attending a workshop on 4 October in London to address this #CF #researchpriority. cysticfibrosis.org.uk/ageingworkshop
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jamie duckers retweetledi
A really touching account of life with CF and how this has changed post Kaftrio.
AuralApothecary@AuralApothecary
NEW EPISODE - Cystic Fibrosis A joyful story this week when we chat to Louise Jenkins - who has cystic fibrosis - about growing up and trying to lead a normal life with this serious and unforgiving condition and the transformative effects of recent innovations in drug therapy.
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jamie duckers retweetledi
Tomorrow is International Clinical Trials Day! Clinical trials help find the most effective prevention and treatment of illnesses. We are proud to be home of samples from closed clinical trials in various disease areas, enabling the samples to be further used in future research.
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jamie duckers retweetledi
Please retweet to your networks. Respiratory specific learning and networking opportunity in north wales @allwalescf @WelshThoracic @BetsiCadwaladr @PTHBhealth @TheACPRC @addy_charlotte #resped
Health & Wellbeing 360 Ltd@HWB360LTD
Less than 4 weeks to go until our Summer Welsh Thoracic Society meeting in North Wales.Pop us a message for the registration form. Looking forward to another great event! @keir_lewis @joseph_ALUK @CarwynBridges
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jamie duckers retweetledi
Check out this great new study looking at the impact of tummy symptoms for PwCF. Anyone can sign up and help test this great app! #Notjustlungs
cftummytracker.org
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jamie duckers retweetledi
Do you use an Aerobika to help manage your PCD? Then we would like your input!
To take part in this study:
✅ be an adult (18+),
✅ have a diagnosis of bronchiectasis (and/or CF or COPD),
✅ are happy to give 1 hour of your time
Sign up here: forms.office.com/Pages/Response…
#PCD
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jamie duckers retweetledi
Not only physios but people with COPD, Bronchiectasis, and Cystic Fibrosis. Would be great to have the opportunity to hear your opinion. @cftrust @asthmalungcymru @allwalescf
Health & Wellbeing 360 Ltd@HWB360LTD
Calling all Respiratory Physiotherapists! Are you familiar with the Aerobika device? We are conducting a focus group session for health care staff that have experience in teaching airways clearance. If selected you will be compensated for your time. Sign up by via the link below.
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jamie duckers retweetledi
1️⃣ Genetic therapies for cystic fibrosis are getting closer. These have the potential to work for everyone with CF, no matter what type of CF mutation you have. Keep an eye out for more information on genetic therapies and clinical trials on our website. (2/6)
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jamie duckers retweetledi
Excited to be in Wales at the 5th annual CF Trust Trials Conference! @CFAware @questionCF @ebChildHealth
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jamie duckers retweetledi
Really good to be at ICC in Newport today for @cftrust clinical trials conference. Fantastic programme and really inspiring interactions with colleagues.
ManchesterCFResearch@Manchester_cf
Today is the UK CF trials conference in Newport. Has been amazing to hear about the evolving nature of CF trials and especially about upcoming trials for patients not on modulators. More information to follow but do please ask in clinic too!!
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jamie duckers retweetledi
The 5th UK Cystic Fibrosis Clinical Trials Conference takes place today! We’re proud to support #cysticfibrosis research with our adult and children CF collections donated by patients at @CV_UHB. We have provided samples to 5 research projects on CF in the past 12 months.
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jamie duckers retweetledi
The 5th annual UK Cystic Fibrosis Clinical Trials Conference in Newport will be another great opportunity for the CTAP and CF research community to come together to share knowledge and learnings. @cftrust #cysticfibrosis
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