Top Tweets for #ORKAMBI
#FbrosisQuística @sanidadgob incluye en el #SNS indicaciones pediátricas de #Kaftrio de 2 a 5 años, #Orkambi a partir de 1 año y #Kalydeco a partir de 4 meses. @FEFQ_CFspain @juan61979 @SeparRespira @FISIOSEPAR @neumopararesis #Trasplante @ONT_esp
https://t.co/ecw4FAb6Dt
7 years ago I organised a protest in Dáil Éireann fighting for not only my life but the lives of CF patients in Ireland, the Orkambi campaign is my proudest achievement, 18 hour days, meetings, I’d do it all over again, we won 💪 #orkambi #cysticfibrosis #spearhead
Fifth is another petition, this time specific to the recent news; https://t.co/p5erffger8
Please sign this petition urging @VertexPharma, @NICEComms, the @NHSuk, and relevant decision-makers to reconsider this stance on #orkambi and #kaftrio!
The #orkambi campaign was my proudest achievement, I could have never imagined all that would happen in the 6 years that’s passed…#kidneyfailure #dialysis #coma #kidneytransplant & #spinalsurgery just WOW #becomeadonor #organdonation #memories
@RedCollectiveUK @jeremycorbyn Christina & Luis said that @jeremycorbyn was amazing that day
There are still 1,000's of patients around the world without access to CF modulators like #Orkambi & #Trikafta
If anyone can sign & share the global access petition we would be so grateful 🙏
https://t.co/5tk5wBHFVL
Raising the next generation of #StarWars fans! @MarkHamill
R is 13 months and H was 7 months when in the same outfit! This really highlights the growth delay that has been caused by R's #cysticfibrosis, but he's determined to catch up now he's on #Orkambi!
Started with an eye appointment for R to double check his eyes for the #Orkambi he's on at @BTHFT, he wasn't very cooperative, but the staff member was very helpful and kind. Then to a Great time for H & R at the @Scarecrowsfest #Kettlewell today, with scarecrows and ice cream!
Goodnight all!
Nearly two weeks since he started #Orkambi and already he knows when it's coming, as we mix it with puree to hide the bitterness, although I think the spoon full of peanut butter straight after helps 🤣 (extra fat to help efficiency) #cysticfibrosis #sleepyhead
Mrs Oxlade and Rufus a year apart.
What a difference time and a mother's love makes. Honestly couldn't ask for a better mother for our two boys.
Rufus has been on #Orkambi for a week and the fact he's avoided mine and Henry's cold is a massive change for him!
Who knew what choas one more medication would make to a morning and night routine!
We have a plan for Rufus' routine today and we'll see how it goes, but trying to fit in #Orkambi to his already busy #cysticfibrosis related schedule first thing and at bedtime has been fun! 🤣🤣
Today is the start of a brighter future for the little guy, his #Orkambi has arrived!
This is a huge day for him and our family, giving hope for better days!
#cysticfibrosis #CF
Buenísimas notícias 🙌🙂 Esperemos que pronto esté disponible en nuestro país.
#FibrosisQuistica #HoyPuedoConTodo #FQAndalucia #AsociacionAndaluzaFibrosisQuistica #FQ #MovimientoAsociativo #CysticFibrosis #CF #EnfermedadesRaras #Visibilidad #Investigación #RareDisease #Orkambi
❗️Seguimos avanzando! 👏👏
✅ La Comisión Europea ha aprobado ampliar el uso del medicamento Orkambi para incluir a niños y niñas a partir de 1 año con Fibrosis Quística y dos copias de la mutación F508del en el gen CFTR.
ℹ️ Más información: https://t.co/ZECac4qiS6
Stephen Carson from @QUBelfast Queen's University Belfast on the effects of year-long #Orkambi therapy on lung #microbiota in people with #cysticfibrosis, demonstrating an improved clinical outcome following therapy @AMIposts #LAM_ECS2023
#Orkambi has been approved for 1 year old, meaning R could start taking #cysticfibrosis medication within 4 months!
Next is hoping #Kaftrio is soon approved for 2 years old!
And it's all because @NHS @Leeds_Childrens @BTHFT fund this life changing medication. Thank you!
When I was born #cysticfibrosis was literally a death sentence. @VertexPharma Modulator drugs have transformed CF lives! Median #survivalage is 51.8. #cysticfibrosis #60YearsOfCFI #survival #chronicillness #medicaladvances #vertex #orkambi #symkevi #kaftrio #trikafta #kalydeco
If you’re a person with #cysticfibrosis or a parent/carer for someone with CF, with experience of #Orkambi, #Symkevi or #Kaftrio, please complete our short survey and tell us about your experiences. (3/4)
https://t.co/KPbzJm3idR
Part of the NHS deal to grant access to #Orkambi, #Symkevi and #Kaftrio included an agreement that data would be collected on their effectiveness and that @NICEComms, would assess them.
Keith Brownlee, Director of Medical Affairs at the Trust, explains more in this video. (1/4)
In 2020 the threat of #compulsorylicensing also brought @VertexPharma to the negotiation table in🇨🇭 & led to a price deal with #Orkambi.
#Trikafta is now sold at >CHF 200 000 a year, with an unknown rebate https://t.co/vyK0Ot5FtQ
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