CF Get Loud 已转推
Brilliant to see @uaem supporting our calls for global access to @VertexPharma’s lifesaving #CysticFibrosis drugs.
Lifesaving drugs should never be a luxury for the few. 💊🌍
#RightToBreathe #Trikafta4All
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CF Get Loud
1.2K posts
CF Get Loud
@CFgetloud
A resource for patients and their networks to GET LOUD for access to medications in Canada for cystic fibrosis patients. Speak up to help save Canadians with CF
Canada 加入时间 Şubat 2020
312 关注461 粉丝
@IStedman Thank you for sharing your story at the @raredisorders conference.
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Thank @IpsosCanada for listening to the #RareCommunity and elevating our voice.
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Attending the @raredisorders #RareDisease Conference today virtually. Looking forward to hearing details regarding the National Strategy for Rare Disease Drugs. Looking forward to actionable progress! @raredisorders #rare4rare #Canada4rare
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RARE innovators@RAREinnovators
Big day for rare disease patients across🇨🇦 @GovCanHealth funding will help rare disease patients gain better & faster access to meds👉 repping RAREi @AlexionPharma ’s Kathleen Whelan w @jyduclos @Durhane @raredisorders @McGillu #Canada4Rare #RareDisease bit.ly/3lBUCXS
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Seeing many familiar, hardworking people on today’s announcement. #canada4rare We look forward to how this will eliminate the #postalcodelottery @Durhane
CORD@raredisorders
At event: @Durhane: With today’s #raredisease funding announcement, Canada has the opportunity to implement the very best program in the world for rare disease patients. #Canada4Rare #CdnPoli #CdnHealth bit.ly/3FDU3Ub
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Attending the Rare Disease Announcement regarding our National Rare Disease Strategy & reviewing how this will positively impact the CF and rare communities in Canada.
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CF Get Loud 已转推
We are proud to be attending @raredisorders #RareDisease breakfast at Queen’s Park this morning.
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CF Get Loud 已转推
Important to have a national Rare Disease strategy to help people with a rare diagnosis. Family of Ontario man with rare cancer faces $300K bill for treatment they feel will save his life | CBC News cbc.ca/news/canada/th…
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CF Get Loud 已转推
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CF Get Loud 已转推
Great chatting with @BobBaileyPC @ONPARLeducation this morning. It was fabulous to know he remembered Madi and was looking forward to getting further involved in solving the issues still plaguing CF patients regarding access to modulators.#CFcantwait #OntarioRarediseaseprogram
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CF Get Loud 已转推
Time to look for solutions Ontario, they’re out there!
#cfcantwait
Hunter Guindon@HunterGuindon
Last week, I picked up my 14th refill of Trikafta - a drug that has changed my life - and for the 14th time, I didn’t pay a cent out of pocket. For 14 months, I’ve watched #CF patients in Ont continue to decline because they can’t afford their gov’s deductible #FixtheBrokenSystem
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CF Get Loud 已转推
Madi and I are excited to continue the work we started with @mppjimwilson all those years ago with @BrianSaunderson. Our meeting this morning was fruitful and I we feel can work together to fill the gaps in our system. #CFcantwait #Fixthebrokensystem #OntarioRareDiseaseStrategy
Brian Saunderson, MPP for Simcoe-Grey@BrianSaunderson
For over 10 years, Beth and Madi Vanstone have been coming to Queen's Park to advocate the access of life saving medication for Canadians living with Cystic Fibrosis. @CFCanada Thank you both for meeting with me. I look forward to working together.
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CF Get Loud 已转推
@BrianSaunderson @CFCanada So great meeting with you! Look forward to continuing to make Ontario more equitable for patients with #cysticfibrosis and other #RareDisease.
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CF Get Loud 已转推
CF Get Loud 已转推
.@SylviaJonesMPP Some #Ontarians living with #CF can’t afford the high deductible to access their #RareDiseaseMeds others must leave private insurance plans to access. #FixTheBrokenSystem #OntarioRareDisease
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