Podcast Producer @TheBonnellFoundation Liaison @UofT Pharmacology Dep Former Director @CFGetLoud , Advocate for Cystic Fibrosis and the rare disease community.
Ontario Canada
Joined May 2015
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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
beth Vanstone retweeted
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.
➡ bit.ly/3TytlmR
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 ouest-france.fr/bretagne/ros…
Where’s the faucet? 😂
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. 😂
teapaw.org/MadisonKittay/status/1…
beth Vanstone retweeted
Registration Now Open! Apply for Scholarships & Book Your Hotel! Visit this link to register, secure your hotel room, and apply for scholarships!
raredisorders.ca/events/upco…
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.
beth Vanstone retweeted
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 pipcpatients.org/value-asses…
Never give up!!
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) mol.im/a/13805273 via @MailOnline
beth Vanstone retweeted
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: youtu.be/4PMlA_diQ8k?si=4HU5…
beth Vanstone retweeted
Let me get this straight. 18 #tvdsb senior staff had a Toronto retreat?? My school won't have photocopy paper, and kids won't have pencils due to an $8 M deficit, but execs get a retreat? Why aren't basic teaching supplies "an industry standard"? #onted lfpress.com/news/local-news/…
beth Vanstone retweeted
As policymakers shift away from using metrics like #QALYs , it's important to ensure alternative measures do not discriminate or pose tradeoffs that put patients and people with #disabilities at risk. #ValueOurHealth pipcpatients.org/value-asses…
beth Vanstone retweeted
iHope Genetic Health has launched its first pro bono genetic testing initiative in partnership with @SickKidsNews and @CHEO to bring life-changing genetic testing to undiagnosed children from under-resourced communities worldwide.
Learn more here: cheo.on.ca/en/news/genetic-a…
🎉🎉🎉 Congratulations @AM34
beth Vanstone retweeted
Renowned immunologist Dr. @DavidFajgenbaum explains #DrugRepurposing for #RareDiseases.
This is from NORD's education series, Rare Disease Drug Development: What Patients & Advocates Need to Know. Enroll here: learn.rarediseases.org/cours…
#FDA #RareDisease #DrugDevelopment
beth Vanstone retweeted
There isn't one wait list for surgery.
There are thousands that depend on the hospital and the surgeon.
And those waits-vary wildly as detailed in this Ontario study.
My take away -fix those disparities first, by having a single-entry wait list for non urgent surgery, where patients go to the next available qualified doctor, and you won't need private clinics.
@UBCmedicine @uoftmedicine @ICESOntario @UHN @QueensUHealth @nshealth @WCHospital
journals.plos.org/plosone/ar… @PLOSONE
#WaitingList #surgery #healthcare #surgery
beth Vanstone retweeted
I'm grateful to @LurieChildrens and @CF_Foundation for their collaboration in creating the first @CDCChronic -supported National Indicator Report for Cystic Fibrosis! Read more here: luriechildrens.org/en/news-s… @DrMeghanMcGarry @NOAACF
beth Vanstone retweeted
August is #InternationalAutoinflammatoryAwarenessMonth 🌟
To kick off the month, we’re highlighting an interview with Ian Stedman from @YorkUniversity, a #patientadvocate in the autoinflammatory disease community.
📖 Read the full interview here: journals.biologists.com/dmm/…
beth Vanstone retweeted
An absolute travesty at the Olympics.
Angela Carini is forced to box against a biological male. She quits after just 45 seconds, and cries hysterically as her opponent is declared the winner.
Don't look away. This is wokeness.
So fortunate to have Dr Ward working with our community!
This Post is from an account that no longer exists. Learn more
beth Vanstone retweeted
Meet Dr. Leanne Ward, Senior Scientist @CHEO and CRDN "Innovative Therapies" Pillar Lead.
Discover more about Dr. Ward’s impactful work and her perspective on #rarediseases at: canadianrdn.ca/bio-page-lean…
#CRDN #MeetOurSteeringCommittee
