.Sylvia Jones 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

This morning I had the pleasure of attending the Cystic Fibrosis Canada 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.

Brian Saunderson, MPP for Simcoe-Grey Cystic Fibrosis Canada So great meeting with you! Look forward to continuing to make Ontario more equitable for patients with #cysticfibrosis and other #RareDisease.

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

Great chatting with Bob Bailey @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

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…

Fabulous day of advocacy. #CFCantwait @fixthebrokensystem #OntarioRareDiseaseDrugProgram

Madi and I are excited to continue the work we started with Jim Wilson all those years ago with Brian Saunderson, MPP for Simcoe-Grey. Our meeting this morning was fruitful and I we feel can work together to fill the gaps in our system. #CFcantwait #Fixthebrokensystem #OntarioRareDiseaseStrategy

👏 Thank you Robin Martin for joining us today on #RareDiseaseDay2023

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

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

Seeing many familiar, hardworking people on today’s announcement. #canada4rare We look forward to how this will eliminate the #postalcodelottery Durhane Wong-Rieger

Our community is celebrating progress today with CORD Durhane Wong-Rieger John Adams

Attending the CORD #RareDisease Conference today virtually. Looking forward to hearing details regarding the National Strategy for Rare Disease Drugs. Looking forward to actionable progress! CORD #rare4rare #Canada4rare

Thank Ipsos Canada for listening to the #RareCommunity and elevating our voice.

Brilliant to see UAEM supporting our calls for global access to Vertex Pharmaceuticals’s lifesaving #CysticFibrosis drugs. Lifesaving drugs should never be a luxury for the few. 💊🌍 #RightToBreathe #Trikafta4All