Podcast Producer @TheBonnellFoundation Liaison @UofT Pharmacology Dep Former Director @CFGetLoud , Advocate for Cystic Fibrosis and the rare disease community.
Thank you Terry for recognizing @raredisorders and Madi and I for our efforts towards a #RDDS We appreciate your continued support and look forward to continuing our work together. #CdnPoli#Canada4Rare
SickKids is proud to be named one of the world's best children's hospitals!
For the 4️⃣th year in a row, SickKids is among the top in a @Newsweek ranking of hospitals that offer specialized care, based on a global survey of health-care professionals.
➡ https://t.co/5mXGusctP7
We are experiencing the same challenges in Canada. It’s shameful patients should have the opportunity to trial.
Rare in Rare.
#dobetter#nooneleftbehind
New #CysticFibrosis therapies exist, but not all patients in France can access them due to restrictive mutation-specific policies. Why should life-saving treatments only benefit some? #ValueOurHealth#HealthEquity https://t.co/3hEYRTOGSM
@WesternRare My daughter Madi and I are part of an exciting initiative working with the U of T pharmacology dept. Experiential learning. Luv what your podcast is doing to raise awareness for Rare Disease!
Spectacular.
Not sure how I missed Trump’s “Canada has a massive water faucet that I’ll make them turn on when I’m President” skit.
I think he’s referring to Niagara Falls. 😂
https://t.co/hN2T6MbLfs
Registration Now Open! Apply for Scholarships & Book Your Hotel! Visit this link to register, secure your hotel room, and apply for scholarships!
https://t.co/b72BfYVaun
This moment brought to you by gratitude. This morning I reached into my fridge grabbed the eggs, coffee and ketchup and paused to remember how lucky I am to have a full fridge. A moment of gratitude for the things we so often take for granted can provide peace.
With the development of more metrics for #valueassessment, it's essential that policymakers and payers grasp the tradeoffs involved and focus on the needs of patients and individuals with disabilities. #HealthEquity#ValueOurHealth https://t.co/vUXJX4Mch0
The power of parents - drug that Canadian father helped to create, now about to go into formal clinical trials for a rare neurological disorder called Spastic paraplegia 50 (SPG50) https://t.co/GuIf3NVA4O via @MailOnline
Meet Daniel Kinchlea: A young champion of resilience
This #InternationalAutoinflammatoryAwarenessMonth, we celebrate the incredible journey of 10-year-old Daniel Kinchlea!
👉 Watch Daniel's inspiring story: https://t.co/dOkr3XLT3F