So much has happened in 13 years. It’s worth remembering the journey. These CFTR modulators are changing lives. Our daughter is one. Big news at the end of the video.
Posted with her permission. #cysticfibrosisawareness #cysticfibrosis #cfaware #kaftrio #alyftrek
www.instagram.com/reel/DWPP5pm...
Ten years ago today. This picture is a very painful memory. She was desperately ill & we waited for a bed. She knew the significance of it & put on her best party dress. Strong like her lion, we said. Now thanks to Kaftrio she is living an essentially normal ish life #cysticfibrosis #kaftrio
Cystic fibrosis combination therapy #Kaftrio enabled US patients to reduce their use of inhaled antibiotics, hypertonic saline, dornase alfa and azithromycin
#clinicaltrial #cysticfibrosis #CFtreatment
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Screenshot of the first two paragraphs of the article
"Advocacy groups form a buyer’s club to obtain generic versions of pricey #Vertex #CysticFibrosis drug [ #Trikafta #Kaftrio]"
#EssentialMedicines 💊🌐
www.statnews.com/pharmalot/20...
La HAS vient d’autoriser l’accès précoce de Kaftrio®/Kalydeco® aux patients atteints de #mucoviscidose âgés de 2 ans et +, porteurs d’au moins une mutation qui ne soit pas de classe I et non porteurs de la mutation F508del.
muco-cftr.fr/acces-precoc...
#maladiesrares #fsmr #modulateurs #kaftrio
C’est officiel : la prise en charge de Kaftrio et Kalydeco dès 2 ans vient d’être publiée au JO. Le traitement sera dispo en pharmacie de ville pour ~500 enfants (mutation F508del). Une avancée concrète pour les familles ! #Kaftrio #Muco #Santé
Deuxième lecture & vote du projet de loi-programme en com #Santé et questions au min. Vandenbroucke ea s/ la lutte contre la résistance aux antimicrobiens, le remboursement du #Kaftrio, TDAH, les maisons médicales > tinyurl.com/3n6xbnek
Live ▶️ tinyurl.com/5ma68886
Our very own @hgavillet.bsky.social giving her talk today at #ECFS2025 in Milan on the impact of #kaftrio CFTR modulator therapy on the #CysticFibrosis lung microbiome
Our KAFPATH-CF study is a multi-national (UK, USA, & Canada) multi-centre long-term longitudinal study of adults with #CF
Medicijn Kaftrio voor jonge kinderen met taaislijmziekte wordt vergoed
www.transport-online.nl/77832/medici... #Agema #Kaftrio #kinderen #medicijn #taaislijmziekte
#kaftrio #cysticfibrosis
For 90 per cent of CF patients, Kaftrio is transformational, but it doesn’t help everybody.
Fought so hard to get access to CF modulators. In the past two years possibly 1 course of antibiotics in total. Prior to these drugs probably 10-12 courses per year. Amazing medications #cysticfibrosis #kaftrio #trikafta #kalydeco
Daughter’s #cysticfibrosis annual review. First ever year with NO antibiotics. Thanks to #Kaftrio
#Mucoviscidose #Kaftrio la bataille contre le chantage des labos pour notre survie. Tout ce que vous avez toujours voulu savoir sur nos angoisses est dans ce reportage.
Still amazed at having Bluetooth enabled spirometry -#Spirobank at home for my DD. Readings can be sent to CF team to monitor her. Technology can really help reduce care/treatment burden. Would love drive through sample drop off to reduce need to park & go in. #Kaftrio works
Wie viel Prozent hast Du denn dazu gewonnen durch #Kaftrio? Ich vermute Deine Einschränkungen sind immer noch groß genug.
#Kaftrio #Trikafta making possibilities #cysticfibrosis
OneRepublic - I Lived (Official Music Video) https://youtu.be/z0rxydSolwU via @YouTube
Yesterday I saw my dad for the first time since 2018. Meeting delayed very much by COVID. We ate Ghanaian food. My daughters #Kaftrio has significantly increased her appetite. She ate more #JollofRice than me. Grateful.
Many still lack access to basic medicines & care, let alone #precisionmedicine. For these people we must still campaign, fundraise & develop new treatments. #Kaftrio #cysticfibrosis #CF #trikafta
Finally. It’s here! Years of campaigning. A true miracle drug. Got to admit I cried as I held the box in my hand. What a wait we have had.
However, so many people in the CF family didn’t make it to get this medication, that makes it bittersweet. #Kaftrio #Trikafta #CF
Getting requests for my daughters extra #Symkevi tablets via social media. I’m so sorry other countries don’t have access. We need equitable access to precision meds. The prescriptions are precise, we don’t get #kaftrio until all tablets are used. She hasn’t started yet.
Oh and this should be the year my daughter finally gets #Trikafta #kaftrio the gene modulating drug from @VertexPharma
www.saltwire.com/atlantic-canada/news/goi...
Then we were given news of big significance.
Probably. Most likely. Should be. Probably definitely. Hopefully.
As well as the #kaftrio announcement was some other news....
Just after the #kaftrio announcement I never bothered to read anything further. It was bittersweet. She needs to wait another 5 years to get it. She is 7 now
