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