Top Tweets for #spinrazaNOW
@jonathanogrady @IrishTimes @NovartisGene @INFO_NCPE @roinnslainte @HSELive @SMAIreland @Temple_Street @Independent_ie @rte Here here Jonathan! How far we've come since #SpinrazaNow. A real sign of maturity in the HTA process and a template for how treatment for @RareDiseasesIE could and should be handled. Three cheers for @INFO_NCPE @roinnslainte @HSELive @Temple_Street.
Interview this morning with @VirginMediaNews to highlight the 12 children still waiting for life saving drug #SpinrazaNow 13 months later @DonnellyStephen @MichealMartinTD
@DonnellyStephen Can YOU help the children that are still waiting the administration of spinraza after it been approved and funded over a year ago .. #glenslifematters #glensgang #spinrazaNOW #sma
@SimonHarrisTD @morningireland What about the lack of beds for children STILL awaiting spinraza after it being approved last June .. can they be accommodated in these figures #glenslifematters #glensgang #spinrazaNOW
It was with regret that on the final day of the #Dáil for 2019 that I am still raising the urgent need of the drug #Spinraza for the Children in #Ireland suffering with SMA & are STILL WAITING for this life changing treatment. This drug was approved 6 months ago! #SpinrazaNow
Lovely to meet Sam Bailey and his family while on a recent canvass with @shanemoynihan in #Rathcoole.Thanks to Sam's mum Fiona Bailey for taking the photo. #Spinraza #SpinrazaNow
Secured a special debate to demand action from the Health Minister on #Spinraza Disappointing that he could not be in the #Dáil at the time. However he has scheduled a meeting with me & colleagues next week #SpinrazaNow https://t.co/ZpSBy1TOii…/dail_20191114T090000.000008.…
STILL NO #Spinraza The @HSELive APPROVED #Spinraza for children suffering from SMA in Ireland on the 11th of June this year. Yet 4 months later Sam and all the other children are STILL WAITING FOR TREATMENT.
#SpinrazaNow
@SimonHarrisTD @LeoVaradkar @paulreiddublin @HSELive why are Irish children still waiting for their treatments to start #Spinraza #Spinraza4Irel #SpinrazaNow #Brexit
There are just 43 people in Ireland with Spinal Muscular Atrophy? HSE approved Spinraza for under 18's in June, providing life saving treatment for 25 children. However 18 adults EXCLUDED. Discriminatory, cruel and unscientific. Must be changed immediately. #SpinrazaNow
@Jarlath @SimonHarrisTD @IvanYatesNT @Jarlath thank you very much for your support! I am so grateful to @IvanYatesNT for giving me the opportunity to raise awareness about this important issue. We need to keep the pressure on #HSE as current policy is discriminatory, cruel and unscientific. #Spinraza #SpinrazaNow
I was blown away when I heard Jonathan O'Grady talking to Ivan Yates about #SpinalMuscularAtrophy and the drug Spinraza. This needs more coverage. Please listen. Please retweet.
#SpinrazaNow #Spinraza @jonathanogrady @SimonHarrisTD @IvanYatesNT
https://t.co/OGFOb6UVqX
Adults in Ireland with SMA need access to #Spinraza. HSE age cap cruel, discriminatory and unscientific. Please take a moment to listen to my interview with #IvanNT on @NewstalkFM #SpinrazaNow
https://t.co/cNLui1dWdw
We had the best day at school today with huge celebrations 🥳🥳 So delighted for Grace and her family ✨ I've never seen smiles so bright and eyes so full of hope ☺️ #Spinraza #spinrazaNOW #SMA
We cannot express in words our delight at this news!!
Words can’t describe how happy our family is today thanks to everyone who supported us in the fight for spinraza it was finally approved #glensgang #glenslifematters #spinrazanow
Very welcome news that #Spinraza has finally been approved - I had submitted a motion on the need to approve this life-changing drug earlier this year #SpinrazaNow
Fantastic news for our student Glen and his family as #Spinraza has now been approved by the HSE! #NeverGiveUp #SpinrazaNow #GlensLifeMatters
Welcome News #Spinraza has just been approved by the @HSELive #SpinrazaNow .. Delighted for all the families and children involved.
#spinrazanow Thanks for the support @JPPhelan and as always to @eimeardeschemer at @kclr96fm for keeping Spinraza in the headlines for us. @SMAIrelandCom
On #KCLRLive Minister for State for Local Government and Electoral Reform @JPPhelan joins @eimeardeschemer in studio on Spinraza, as a local family are awaiting HSE approval on June 11th & we will also be chatting about the recount in the Ireland South European elections...
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