From the Cystic Fibrosis research group at Manchester University. A forum to update public, patients, and other researchers on what we do and why we do it.
Manchester is host to the PULSE-CF Research Innovation Hub, a major new research initiative from @cftrust and @LifeARC . You can find out more about the hub from pulse-cf.com and see our new study animation at vimeo.com/1049633163
Want to join a brilliant team - we are hiring!
Looking for a new clinical research fellow to join the new CF Research Innovation Hub. Great opportunity to work on CF infections and exacerbations and study for a PhD.
Job link below
bmj.com/careers/job/210927/c…
ALT It's been shocking to watch the violent riots unfold across the UK, and this may have left people feeling unsafe and concerned about attending vital medical appointments.
Discrimination and racism are unacceptable and should not impact health. We will continue to advocate for everyone affected by cystic fibrosis, ensuring there are no barriers to care for our diverse community.
Right now, most long-term lung conditions are detected when there is irreversible damage to the lungs. Being able to intervene before the damage is permanent is crucial and only possible if we #FundRespiratoryResearch. Read our report on the @ThoraxBMJ: bit.ly/4dpDVoh
ALT Image of two booklets, one of the covers says 'fixing lung health in the UK' and the other is an image of the inside of the booklet with an overlay image of the Asthma Lung UK logo
Have you entered our Summer raffle yet? 🌞
Enter by 12 Aug for just £1 and be in with a chance of winning a £2,000!
Every ticket you buy or sell will help us continue to fund essential research to provide life-changing treatments for people with CF.
⛱️ ow.ly/KfBJ50SRkI2
Today we got accredited! Still awaiting result and full feedback but they did mention that the patient feedback was the best they’d had from any ward they’d done so thank you to all of you who gave us feedback today and through your surveys! & well done to the team on today ⭐️🤞🏼
You can shape the future of research into breathlessness, something that affects everyone living with a lung condition.
Take @ALUK_Research’s short survey to share your research priorities: bit.ly/3W7kUAB
It’s scary when you can’t catch your breath. What do you think future research into why people struggle to catch their breath should prioritise? Take @aluk_research's short survey to share your top 10 research priorities: orlo.uk/HiQDO
Catch up on series two of our #CForYourself podcast with Lucy Baxter.
We're currently planning series 3, so send us your ideas for what you'd like to see covered by emailing podcast@cysticfibrosis.org.uk.
➡️ Search 'CForYourself' on your usual podcast provider app to listen.
ALT A logo for the CFor Yourself podcast sits on the bottom left of the page. Below it says "Catch up on series 2 of our podcast". An illustration of a studio light shines towards images of four guests: James Dunmore, Jane, Lyndall Grace, and Jack Kingsey.
ALT A list of the episodes on season 2 of the podcast:
Episode 1 - Living with an invisible condition
Episode 2- CF and the menopause
Episode 3- CF and dating with Lyndall Grace
Episode 4- CF and interior design with Jack Kinsey
Episode 5- Research using lung MRI in CF
Episode 6- Navigating grief and CF carrier testing with James Dunmore
Episode 7-Youth Advisory Group takeover
Episode 8- Behind the scenes at Cystic Fibrosis Trust
We're delighted that our Clinical Trials Accelerator Platform was included as an example of a charity-funded research asset by @AMRC in their 'Spotlight on research infrastructure' report last week.
Find out more about CTAP on our website #cfnews
➡️ ow.ly/8g1u50SIcQH
Our website has the latest information on Creon, you can check this out via the link in our bio.
Please do get in touch with your CF teams if you are struggling to access Creon from your local pharmacy.
cysticfibrosis.org.uk/what-i…
UK #CysticFibrosis community! Tell us about your thoughts on inhaled meds & interacting with your care providers post-Kaftrio in this anonymous 5-10 min research survey. Your voice matters! Please share! [shef.qualtrics.com/jfe/form/…] #CF
By joining our Involvement Group, your voice can be heard by researchers, clinicians, pharmaceutical companies and important regulatory organisations like the MHRA and NICE.
Email involvement@cysticfibrosis.org.uk if you would like to know more about how you can get involved.
We congratulate @Keir_Starmer on his appointment as Prime Minister and look forward to working with @wesstreeting, the new Secretary of State for Health to make people with #cysticfibrosis a priority.
ALT Statement from Cystic Fibrosis Trust following last week's election: We congratulate Keir Starmer on his appointment as Prime Minister and look forward to working with Wes Streeting, the new Secretary of State for Health to make people with cystic fibrosis a priority.
On their essential ‘must do’ list has to be ensuring that the welfare system supports and does not penalise people with long term conditions who need it, making prescriptions free in England so no-one with CF in the UK has to pay for the medicines they need to stay alive, improving air quality and the effects of pollution on health, and securing the future of CF specialist care’.