PMCFNI

Precision Medication for Cystic Fibrosis- Northern Ireland. #LifesavingDrugs4CFNI. This account is not run by a clinician. It exists to share developments.

[PMCFNI @pmcfni]

We are delighted a deal with @VertexPharma has been made for 90% of people with #CF in #NI & urge Vertex to submit data for 6-11 year olds to EMA as quickly as possible so that more children in NI benefit from this #lifesavingdrug. Thank you to all involved, long live the NHS.

[Department of Health @healthdpt]

Kaftrio to be made available for cystic fibrosis sufferers

https://t.co/7DhJ9pFGs3

[Education Authority @Ed_Authority]

FREE SCHOOL MEALS INFORMATION.

Children with a statement of special educational needs and who require a special diet can avail of free school meals support.
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[Christina Walker 💙 @Guatemalagirl]

I'm pleased to read this for those w/ cysticfibrosis I know will benefit & this intensifies the need for affordable prices for #trikafta globally for ALL age groups. This cruel disease can be stopped in its tracks for 00000's #trikafta4all #CFAwarenessMonth #globalcffamily $vrtx

[Department of Health @healthdpt]

A graduated easing of the advice for CEV people is planned to begin on 12 April 2021.

More info
➡️https://t.co/jIYA8VQgsF

Guidance & advice ➡️https://t.co/yGdQEnPsa7

[Matt Hancock @MattHancock]

Congratulations to my colleague @RobinSwannMoH for the speed of the covid vaccine rollout in Northern Ireland. It's a big UK team effort.

We're making great progress & more to do.

Meanwhile:

Stay at home.
Protect the NHS.
Save lives.

[Just Treatment 💊 @JustTreatment]

2020 pushed the #NHS to breaking point - here's how we fix it in 2021.

Join the nationwide campaign for an #NHSNewDeal today: https://t.co/iVo58TwBRl

[Vertex Pharmaceuticals @VertexPharma]

.@VertexPharma is pleased to announce approval for reimbursement for our first #cysticfibrosis medicine for eligible people living with #CF in Poland.

[Vertex Save Us @VertexSaveUs]

Dying patients w/ #cysticfibrosis are urging compassion & reasonable behaviour by @VertexPharma to get life-saving drugs like #kaftrio to all patients, in line w/ @UNHumanRights guidelines. Thank you for covering @edsilverman @statnews

[Vertex Save Us @VertexSaveUs]

We thank @JenTaylorCousar @pquinton6 for thinking about those around the world left dying without access to @VertexPharma drugs - what we really need is the company to establish a global access to medicines policy to include them all. Please work with us to set up #vertexsaveus

[Vertex Save Us @VertexSaveUs]

‘Dying waiting’: Advocates urge Vertex to widen global access to cystic fibrosis drugs https://t.co/4zVfQMJOJV via @statnews #vertexsaveus #vertexsaveme #vertexsavethem #cysticfibrosis $vrtx @UNHumanRights

[Strawfie Challenge @strawfie]

So no 'compassion' to be shown to #cysticfibrosis patients in most of South America, Africa and Asia then @vertexpharma?

#Lifesavingdrugsforcf #muco #mukovisizdose #cfaware #sistiesefibrose #mukovistsidoz #cističnafibroza
@VertexSave #vertexsaveus #vertexsavethem #cfawareness

[M Rob @ERobL100]

This has to change.

[Vertex Save Us @VertexSaveUs]

‘I’m same person as my friends w/ #cysticfibrosis in US, in UK in Germany. Why I don’t have any drugs to help me, to save my life?’
@vertexpharma this is the reality of your lack of global compassionate access ‘Please Vertex save us’ #vertexsaveus #vertexsaveme #vertexsavethem

[Vertex Save Us @VertexSaveUs]

‘Why should I die when I’m so young, I have a lot of plans, I have a lot of dreams. Why right now should I say goodbye to my friends to my family’ Monika is 24. She has #cysticfibrosis @vertexpharma Please treat the sickest wherever they live, you can afford some compassion $vrtx

[Oddech Życia @oddechzycia]

Przyłącz się do akcji #VertexSaveUs

#vertexsaveme #vertexsavethem @VertexSave @vertexpharma

https://t.co/mRLBNMLfjo

[Vertex Save Us @VertexSaveUs]

Ndumiso also battles his own #cysticfibrosis He & 000’s others in #africa need current drugs & more clinical trials by @vertexpharma. Please don’t discriminate with compassion & establish a strategy for all by geography & genotype #vertexsaveus #vertexsaveme #vertexsavethem $vrtx

[Vertex Save Us @VertexSaveUs]

Ndumiso is from Zimbabwe, he now lives in #SouthAfrica & was the 1st black person w/ #cysticfibrosis to join @SACFA_Central. Ndumiso is brave campaigner 4 awareness of pan-ethnic nature of CF, lack of which restricts diagnosis as discussed at #NACFC @JenTaylorCousar #vertexsaveus

[Vertex Save Us @VertexSaveUs]

'I don't want to die. I want to live'
Humanity is defined by kindness, mercy & sympathy. #vertexsaveus @youngayo6178 @meacham_geoff @rkarnauskas @porgesg @kbiliouris @Brianskorney @meacham_geoff @youngayo6178 @e_darout @corykaz @hartajsingh @rkarnauskas $vrtx @VertexPharma

[Vertex Save Us @VertexSaveUs]

#NACFC2020 #NACFC

[Vertex Save Us @VertexSaveUs]

#NACFC2020 #NACFC

[Vertex Save Us @VertexSaveUs]

#NACFC2020 #NACFC please get behind the call for global access for CFTR modulators. This is about human rights of people to have best attainable health. #cysticfibrosis doesn't need to take lives before age 15 (Bulgaria), 10 (Macedonia) & 21 (South Africa) anymore @VertexPharma