Top Tweets for #vimizim
Speaking at @RAiNAllIreland about living with a rare disease and the unfair fight we have to ensure for urgent treatment. #VIMIZIM #RareDisease #Disabled #RareDisease #RareDiseaseNI #RareDiseaseRoI #RAiN
Nurse Brown on infusion #2 this week. Another hour then I can finally relax and start the weekend but always grateful we have #vimizim
Great news and a relief to all that #Vimizim is secured for another 12 months and for the re-evaluation to resume @MPSSocietyUK
NICE, NHS England and NHS Improvement (NHSE&I) and BioMarin have reached a commercial agreement which will enable the NICE re-evaluation Vimzim to resume. Read the full update: https://t.co/2DzXHr22al
AFTER
31 weeks or
218 days or
5232 hours or
59.5% of the year
It's VIMIZIM DAY!!
I will remain offline for the majority of today.
#mywayaccess #disabled #disabilityawareness #RareDisease #Vimizim #greencastle #omagh
Happy birthday Olivia x #vimizim
Olivia (MPSIV) turned 21! Not only did they celebrate hitting a milestone, but also celebrated 11 yrs of Vimizim ๐พ๐ฅ. โStarting the trial for Vimizim in 2010 has done wonders for my health & is one of the main reasons I was able to celebrate my 21st in the sun with my family."
Proud to administer Samโs #Vimizim infusion again today. Huge respect to our amazing nurses, Iโm experiencing doing a very small part of their work for myself. Itโs stressful and a huge responsibility - a 4 hour process that involves all of this, and 7 bottles of magic โค๏ธ
@MyWayAccess @AmnestyNI @AmnestyIreland @PostcodeLottery @EqualityCommNI @disabilityni @NIHRC @fermanaghomagh Well done Dermot. And Iโm sure the @MPSSocietyUK families are so proud & grateful to you for everything and particularly for #vimizim #raredisease awareness ๐๐
Tomorrow morning, @LittleRoma and I will be in the company of the highly esteemed @MyWayAccess #vimizim ๐
Vimizim (elosulfase alfa) for Morquio A Syndrome (MPS IVA) #RareDisease #healthcare #namedpatientsupply #orphandrugs #ikrispharma #vimizim #morquiosyndrome
Onwards and upwards. Tomorrow is a new day and the summer has many exciting challenges and adventures ahead for me. I've found my mojo again. ๐ช /5/
#pwd #mywayaccess #omagh #disabilityawareness #greencastle #wheelchair #RareDisease #wheelchair #chronicpain #vimizim
Valentina (5) might no longer receive her treatment for a rare disease due to pricing and reimbursement issues?
A game between the #BelgiumAuthorities and #Biomarin. #VIMIZIM #LivingWithMPS #MaggieDeBlock.
https://t.co/eJL2UpMCDc via @HLN_BE
#CarersWeek2019 Weโve been busy all day @LittleRoma with #Vimizim but plenty of time to mull over the misogynistic attitudes re carers ๐
@NI_RDP @HelenMcAneney @SamRob45 @a_j_mcknight @ianjamesparsley @letsinfuse We are with you in spirit #vimizim day here with @LittleRoma ๐ค
Today is #IDPwD and itโs also #Vimizim day here with @LittleRoma and not only that itโs @castleDD birthday! ๐
#vimizim4ireland
Don't deny my friends in the south @campaignforleo @SimonHarrisTD and @simoncoveney. They deserve the same opportunities as me.
Ask questions of @roinnslainte. Support @Irishmpssociety and @Martin_Kenny as they lobby the HSE.
#raredisease #morquio #vimizim
Positive news @SimonHarrisTD. What about funding for rare disease treatments? #vimizim4ireland #vimizim #morquio #pwd #raredisease
https://t.co/hC5Qv12m0a https://t.co/tKydZv4tGD
In @roinnslainte this morning for a meeting with key Department & HSE officials. We now have a funded capital plan to deliver bed capacity report -2,600 more hospital beds over 10 years. Have tasked Dept & HSE to put a plan in place to frontload some of these this year & next
Today is Rare Disease Day. Here is the talk I gave for @rarediseaseday 2017 about living with MPS Morquio in Ireland.
https://t.co/5wXHqwynWn
#AwareAboutRare #ShowYourRare #RareDiseaseDay #Vimizim #RareDiseaseDay2018 #RareDC2018
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