All about Cystic Fibrosis. Always refer to your team for specialist advice. Oh and we don't always agree with RTs.
Joined February 2012
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cf/Aware retweeted
Excited to offer participation in GRAMPUS-CF to patients with cystic fibrosis worldwide. Just click on the link to join the study! grampus-cf.org @cftrust @CF_Foundation @alloonsl @CFAware
cf/Aware retweeted
$VRTX on pace to lose $15B in market value today.
$VRTX - That was a bad quarter. Every product missed. Lower end of guidance raised -- who cares? Lots of handwaving around Journavx access but insignificant revenue. Casgevy is a money loser.
The stock is near an all-time high and trades at 26x, Vertex needs to do better.
The company seems more dependent than ever on its pipeline for future growth.
Analysts mostly shrug.
cf/Aware retweeted
Today the European Medicines Agency’s (EMA) Committee for Medicinal Products for Human Use (CHMP) adopted a positive opinion for our fifth cystic fibrosis (CF) medicine. This is an important step towards our goal of treating all people living with CF.
cf/Aware retweeted
Today the European Medicines Agency’s (EMA) Committee for Medicinal Products for Human Use (CHMP) adopted a positive opinion for the label expansion of our fourth cystic fibrosis (CF) medicine to include an expanded population with certain mutations. This marks an important step towards our goal of treating all people with CF.
cf/Aware retweeted
🚨 New in The Lancet Respiratory Medicine
Phase 3 data on vanzacaftor–tezacaftor–deutivacaftor in #cysticfibrosis
Read open access here:
Patients aged 6–11 years tinyurl.com/446ju86t
Patients aged 12 years and older tinyurl.com/5y453b56
cf/Aware retweeted
GRAMPUS-CF aims to understand gut symptoms in people with cystic fibrosis (CF)
so that we can develop treatments. If you are a person with CF, you can help! Visit
our website for participant information, online consent and to download the app.
grampus-cf.org/ Thank you!
cf/Aware retweeted
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
cf/Aware retweeted
Trikafta revolutionized treatment for Cystic Fibrosis, reaching >90% of patients variants.
But what about the remaining untreatable 10%?
We studied several poorly responsive, FDA-unapproved variants and paved a path forward for drug development.
biorxiv.org/content/10.1101/… 1/7
cf/Aware retweeted
NEW: The DWP is rejecting more than 40% of applications for PIP disability benefit from people with multiple sclerosis, cerebral palsy and arthritis – and one in four applications from amputees
By me, for the Observer 👇theguardian.com/society/arti…
cf/Aware retweeted
The consultation on the proposed benefits change is now live.
Please have your say and tell the Government about it , follow the link, please SHARE.
gov.uk/government/consultati…
cf/Aware retweeted
▶️Three weeks until petition closes
▶️No recent updates
▶️Sign/share for the next generation of #cysticfibrosis
patients
#NoOneLeftBehind
petition.parliament.uk/petit…
@cfaware @VarnalsVintage @RacheyCole @liammchugh1961 @InfamousGreggyG @myCFHero @CFcarer @evergreennebs
cf/Aware retweeted
SACFA and it's affiliated doctors make announcement on #Trikafta in South Africa
The legal case against Vertex Pharmaceuticals in South Africa is still proceeding. Possibly only a third of SA #cysticfibrosis patients will benefit from this deal.
sacfa.org.za/2024-trikaftane…
cf/Aware retweeted
Great to see the James Lind Alliance refresh for Cystic Fibrosis getting a shout out from @Paula_Sommer at #CFGI24. Research priorities for CF jointly agreed by people with CF and clinicians. @CFAware @questionCF @cftrust @CF_Foundation
cf/Aware retweeted
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.
cf/Aware retweeted
#cysticfibrosis @cftrust @CF_Foundation @CFCanada @AMFQMX @mecfassoc @FibrosisQuistic @AFQMALAGA @fqasturias @CFAware @CFCalgary @cf_care @liammchugh1961 @RacheyCole @CFcarer @kifder @Rida_ZA @JoleneinAfrica @TanyaKoorts @vihaan_cfindia @DMoKreis @DrMeghanMcGarry @OlgaGurgula
cf/Aware retweeted
Very grateful to those that have completed my survey or shared it - it will close in a couple of weeks so any further help in boosting response numbers would be much appreciated.
Particularly keen to hear from more people with CF & carers! 🙏🏻 #CysticFibrosis #MRI
Do you have cystic fibrosis? Or care for those that do? Please share your views on lung MRI in our survey: forms.office.com/e/zvqaUWT4Z…
So far, 80% of our responses have come from healthcare staff – can you help boost our responses from people with CF & carers? #MRI #CysticFibrosis
ALT Do you have cystic fibrosis or care for someone who does? Are you a CF healthcare professional? Are you interested in helping develop new technologies for the benefit of people with CF? If so, we need your help! The MAGNIFY Strategic Research Centre is funded by the CF Trust to explore the use of lung magnetic resonance imaging (MRI) in CF care. Lung MRI can help in the monitoring and management of CF, as well as in testing new inhaled treatments. Please click the link in this post to complete our survey and provide your opinions and experience of lung MRI. Your contribution will help to support the use of the technology in CF. Please contact Dan Beever, PhD student, for further information: [email protected].
cf/Aware retweeted
Let's clean the air in medical settings.
This will help to protect patients from all airborne diseases and also help those with #asthma #cysticfibrosis and all #clinicallyvulnerable patients
petition.parliament.uk/petit…
#health @CFAware @asthmalunguk @AprilMay001 @asthmalungscot
cf/Aware retweeted
Thank you @CFKidsUK for funding this travel nebuliser it will make life a little easier! @CF_Foundation @CFAware @cftrust So much time each day is taken up with preventative therapies this will help cut down a little time each day and mean we sometimes manage to arrive on time!!
