We have so much to be thankful for. Here's our message in December. We've realized the promise of access to life-saving cystic fibrosis medicines in 5 provinces. There's work to do to get every CF patient access, but this weekend we give thanks for how far we've come. #CFcantwait

Great discussion on Day 1 of our CORD Fall 2021 Conference. Thank you to our wonderful presenters and participants for joining us. #Canada4Rare Final Agenda:bit.ly/3d4XaWE

I will never stop shouting this from the roof tops!

Pierre Poilievre has apparently deleted the campaign video these screenshots are from (hilltimes.com/2021/08/11/mp-…) but I’m hoping The Hill Times still has it kicking around. This is really important. At least tell us what he’s doing please😭

Great meeting with Noah Ng, from office of @DrFullertonMPP discussing access and affordability issues for CF patients. Team Danielle Weil and Ron Anderson spoke of issues faced by patients and families with #RareDisease Cystic Fibrosis Canada #Advocacy

Great meeting today! We appreciate the opportunity to sit with Noah and have our concerns be heard #cfcantwait #emmecantwait

Getting loud!

Back at #queenspark tomorrow to GET LOUD for #CF families in Canada. We need a pathway to access #raredisease medicine in Ontario. #cfcantwait #canada4rare #cfgetloud

We spoke to a #cf parent today that has to sacrifice dental care & mental health services to gain access to a life-saving cystic fibrosis medicine. Parents shouldn’t have to decline private insurance to gain access to #trikafta through public funding. #canada4rare #cfgetloud

8 out of 14 Canadian jurisdictions fully fund #Trikafta with no co-pays deductibles. Ontario’s #Trillium Drug Program has the 2nd highest deductibles in the country. Ontario used to be the leader in #cf care.  Now, we are falling behind. #cfgetloud #cfcantwait #canada4rare

With food scarcity issues rising in Ontario, rare disease families are needing to choose between paying high-priced government deductibles to access life-saving medicine, or putting food in the table. There NEEDS to be a path for rare here. #cfgetloud #cfcantwait #canada4rare

Some of the largest corporations in Canada refuse to cover life-saving #cysticfibrosis medicine, #trikafta This leaves the government paying MORE to save rare lives in Ontario. If public payers approve a meds, private payers should HAVE to cover it. #cfgetloud #canada4rare

There are still some #Ontario families falling through the cracks. Having to choose between cost-prohibitive #Trillium deductibles and putting a roof over their head or food on their table, Ontario families deserve better. #cfgetloud #cfcantwait #canada4rare

.Stephanie Bowman 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

The cost of living is skyrocketing across Canada. Many can’t afford to fill both their fridge and their oil tank. Imagine ALSO dishing out 4% of your income to pay for medicine you can’t live without. For #RareDisease patients in Ontario, this is a reality. #FixtheBrokenSystem

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

.@drfullertonmpp Create a program that provides equitable and affordable access to life-saving and life-changing drugs for rare diseases.#OntarioRareDiseaseProgram #CFCANTWAIT #FixTheBrokenSystem