Kimberley roberts

Fighting for Our CF Warrior and her friends 💜

[Kimberley roberts @KimberleyRobs12]

@MattHancock @VertexPharma
PLEASE Remember our Loved ones when you meet this week, I beg you please reach a deal and Don’t take my Sunshine “Ivy” away 💔 livesavingdrugs4cf ♥️

[Fight4Orkambi @fight4orkambi]

What’s the hold up with prescribing #Orkambi & #Symkevi at @AlderHey ?? @NHSEngland ?? Patients being told up to 12 months for roll out whilst other patients (Who hit same criteria) across the UK have had access since Dec 2019 🤔🤔

[Fight4Orkambi @fight4orkambi]

@VertexPharma PLEASE ACT NOW!!

Save Ayden & Michelle’s lives!! Please let them access compassionate use #Trikafta 🙏🙏🙏🙏
#SaveLives #ActNow #cysticfibrosis 💜

@NHSEngland @DHSCgovuk a managed access/interim deal needs to happen ASAP to avoid this happening over and over!!

[#UK CF campaigner Sharon @CFno1LeftBehind]

.@VertexPharma This young girl is fighting for her life again Her fragile body can’t take any more So sad this is happening hours after she got Symkevi
She really needed compassionate #trikafta Pls sort it NOW👇🏻
📞 📝 🚕 🚛
The whole CF community is 👀
This is high profile🙏🏻😥

[Kimberley roberts @KimberleyRobs12]

@wgmin_health any updates on the offer vertex have made today? Please we are desperate to hear the long awaited news for our loved ones 🤞

[Kimberley roberts @KimberleyRobs12]

@wgmin_health any news today on access to #lifesavingdrugsforcf
We are waiting in pain every day for the news we desperately need to hear from you 💔😫😭 my daughter is suffering daily, she doesn’t need to be! Keep us a high priority please, over 4 years of fighting for access!

[Kimberley roberts @KimberleyRobs12]

@vaughangething @British_Airways @qatarairways @Cardiff_Airport Vaughan please prioritise our loved ones life’s this week and reach a deal with vertex. Whilst your jetting around our loved ones are suffering on a daily basis. You know the heartbreak this disease has on the sufferer and family. Please we beg you to bring us the news we so need

[Kimberley roberts @KimberleyRobs12]

@wgmin_health @NHSEngland Please please reach a Deal Vaughan, such an unsettling time for us not knowing for certain they have access to these life saving drugs in wales 💔🏴󠁧󠁢󠁷󠁬󠁳󠁿 xxx

[#UK CF campaigner Sharon @CFno1LeftBehind]

@Ed_Owen @richardm56 @cftrust -ThankYou Richard Madeley, perhaps you can arrange for a group of us CF campaigners to explain our ongoing campaign for #LifeSavingDrugsNow #OrkambiNow We’d love to raise the level of awareness even more Thanks to @ChrisMRiches of @Daily_Express who have been amazing

[Chris Riches @ChrisMRiches]

Frustration for anxious #cysticfibrosis families after 'silence' from @NHSuk @VertexPharma and @NICEcomms over their very important meeting.All parties merely said they will "continue discussions". When? What of an interim deal?! #Orkambinow #dailyexpressCrusade4CF @Daily_Express

[Kimberley roberts @KimberleyRobs12]

@CrispinBlunt Thank you so much for you Amazing support for our loved ones battling daily this dreadful disease xx

[Crispin Blunt @CrispinBlunt]

Constituents have highlighted the unfairness of the NICE appraisal model which has led to a horrendous block on the availability of live-changing #CysticFibrosis drugs. NICE must review this to come to an agreeable solution for all parties. Full speech: https://t.co/18DCCT6emH

[Chris Riches @ChrisMRiches]

You cannot keep Alison Fare ( @BrynSeiriol) out of the @Daily_Express - she's in it more than I am!!! #DailyExpressCRUSADE4CF @MattHancock @VertexPharma #OrkambiNOW

[Cystic Fibrosis Trust @cftrust]

Before Mallory Smith, who had #cysticfibrosis, died age 25, she asked her mum to publish her diaries, which now appear in a new book ‘Salt In My Soul, An Unfinished Life’. Hear from her mum about what it means to be able to share Mallory’s #legacy: https://t.co/mT9H48oZ5i

[Kimberley roberts @KimberleyRobs12]

@ChrisMRiches @DHSCgovuk @VertexPharma @Daily_Express Thanks so much Chris for everything your doing, don’t forget we need to find Vaughan Gething 🙄🙈 xxx

[Chris Riches @ChrisMRiches]

Great news for #OrkambiNOW campaigners tonight as @DHSCgovuk confirm "constructive" talks were held with @VertexPharma today - and both sides will meet again next week. #DailyExpressCRUSADE4CF @Daily_Express All parties put forward new ideas we understand

[Matt Hancock @MattHancock]

Constructive meeting with Vertex CEO with NHSE & NICE to find ways of breaking the impasse on #OrkambiNow so we can get this to those who desperately need it. Vertex, NHSE & NICE will meet again next week

[Kimberley roberts @KimberleyRobs12]

@MattHancock This means the would to so many, hearing it direct from you, please Matt don’t ever give up on our loved ones 💔 if this deal is made we can plan our daughters future, stop living in so much fear daily and start living our life’s as a family having fun and making memories 🙏🤞💜