CF Get Loud

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

[Vertex Save Us @VertexSaveUs]

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

[CF Get Loud @CFgetloud]

@IStedman Thank you for sharing your story at the @raredisorders conference.

[CF Get Loud @CFgetloud]

Thank @IpsosCanada for listening to the #RareCommunity and elevating our voice.

[CF Get Loud @CFgetloud]

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

[CF Get Loud @CFgetloud]

Our community is celebrating progress today with @raredisorders @Durhane @johnadams51677

[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

https://t.co/CxqH2K9ufH

[CF Get Loud @CFgetloud]

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 https://t.co/jV07AZ3XBH

[CF Get Loud @CFgetloud]

Attending the Rare Disease Announcement regarding our National Rare Disease Strategy & reviewing how this will positively impact the CF and rare communities in Canada.

[CORD @raredisorders]

👏 Thank you @RobinMartinPC for joining us today on #RareDiseaseDay2023

[CF Get Loud @CFgetloud]

We are proud to be attending @raredisorders #RareDisease breakfast at Queen’s Park this morning.

[CORD @raredisorders]

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 https://t.co/5RAu5MXidE

[beth Vanstone @bethdenniss]

Fabulous day of advocacy. #CFCantwait @fixthebrokensystem #OntarioRareDiseaseDrugProgram

[beth Vanstone @bethdenniss]

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

[beth Vanstone @bethdenniss]

Time to look for solutions Ontario, they’re out there!
#cfcantwait

[beth Vanstone @bethdenniss]

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

[beth Vanstone @bethdenniss]

@BrianSaunderson @CFCanada So great meeting with you! Look forward to continuing to make Ontario more equitable for patients with #cysticfibrosis and other #RareDisease.

[Brian Saunderson, MPP for Simcoe-Grey @BrianSaunderson]

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.

[Team Hanna 🇨🇦 @nrubnik]

.@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