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
Joined February 2020
- Tweets 1,246
- Following 312
- Followers 460
- Likes 1,415
35 Photos and videos
CF Get Loud retweeted
14 Apr 2024
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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28 Mar 2023
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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23 Mar 2023
22 Mar 2023
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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22 Mar 2023
Seeing many familiar, hardworking people on today’s announcement. #canada4rare We look forward to how this will eliminate the #postalcodelottery @Durhane
22 Mar 2023
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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22 Mar 2023
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 retweeted
28 Feb 2023
👏 Thank you @RobinMartinPC for joining us today on #RareDiseaseDay2023
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28 Feb 2023
We are proud to be attending @raredisorders #RareDisease breakfast at Queen’s Park this morning.
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CF Get Loud retweeted
23 Nov 2022
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/thunder-b…
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CF Get Loud retweeted
23 Nov 2022
Fabulous day of advocacy. #CFCantwait @fixthebrokensystem #OntarioRareDiseaseDrugProgram
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CF Get Loud retweeted
23 Nov 2022
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 retweeted
23 Nov 2022
Time to look for solutions Ontario, they’re out there!
#cfcantwait
23 Nov 2022
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 retweeted
23 Nov 2022
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
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 retweeted
23 Nov 2022
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 retweeted
This morning I had the pleasure of attending the @CFCanada breakfast reception to speak on the progress made to access drugs like #trikafta, but recognize there is still more work to be done.
I was happy to see Simcoe-Grey's finest constituents advocating here at Queen's Park.
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CF Get Loud retweeted
23 Nov 2022
.@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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