CORD Mission: Provide a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders.#Canada4Rare
Toronto, Canada
Joined September 2013
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CORD retweeted
Join us in Vancouver on May 22–23, 2026 for an in-person event to discuss the latest developments in the genetics, diagnosis, and management of hereditary thoracic aortic disorders.
Link to register: heritableaorticdisorders.com
CORD retweeted
👏 Congrats to Dr. Lawrence Korngut, CRDN Steering Committee member, on a $553K grant from @BrainCanada to expand CNDR into a multi-modal, open science platform centered on patient-reported outcomes. Big win for the #RareDisease community!
🔗 canadianrdn.ca/brain-canada-…
CORD retweeted
Great to have my @GPAinsights colleague and former AB public drug plan manager Chad Mitchell as part of the discussion on complex rare disease therapies at @raredisorders spring conference
CORD retweeted
#NewProfilePic
Great privilege to sit on the @raredisorders Board of Directors.
The world of AI offers so much to address so many “pain points” in the #raredisease community.
CORD retweeted
Great to hear from Maureen Smith this morning @raredisorders conference in Calgary
As the first @CDA_AMC Patient Board member with lived experience, she brings an important perspective to the future of CDA and how to improve Canada’s drug approval and reimbursement system
CORD retweeted
Only 10% of eligible rare disease patients worldwide receive the treatments they need—leaving too many without access to life-changing therapies.
This #RareDiseaseDay, Durhane Wong-Rieger discusses why urgent action is needed to improve access.
🔗 amgen.ly/4bizjjn
CORD retweeted
Tomorrow is @rarediseaseday! Across Canada and the world, landmarks will be lighting up in pink, purple, green, and blue for #LightUpForRare! ✨
For information on the landmarks that will be lit up, visit @raredisorders : raredisorders.ca/events/upco…
CORD retweeted
Join us TODAY for a special #RareDiseaseDay presentation by Dr. @Durhane Wong-Rieger, president of @raredisorders. Don’t miss this opportunity to gain invaluable insights and be part of the conversation on advancing rare disease solutions. Register: bit.ly/3D0dGYy
CORD retweeted
Join us for a special #RareDiseaseDay presentation by Dr. @Durhane Wong-Rieger, president of @raredisorders. Don’t miss this opportunity to gain invaluable insights and be part of the conversation on advancing rare disease solutions. Register: bit.ly/4ifGkne
CORD retweeted
We’ll be live in one hour! ⏳🎥
Join us soon for CRDN’s session as part of RQMO's "Month of Zebruary"! We’ll be sharing insights on our structure, governance, and three strategic pillars driving rare disease research and care in Canada.
Watch live here: youtube.com/watch?v=BTC4pMpn…
CORD retweeted
Join us for a special #RareDiseaseDay presentation by Dr. @Durhane Wong-Rieger, president of @raredisorders. Don’t miss this opportunity to gain invaluable insights and be part of the conversation on advancing rare disease solutions. Register: bit.ly/4i3zQYv
CORD retweeted
How can we ensure patient access to CGTs? In this episode of our podcast, Jacqueline Barry and @Durhane discuss challenges and solutions, with a focus on #rarediseases. Listen wherever you stream podcasts or at ccrm.ca/podcast #CCRMpodcast @raredisorders @KristaLambComms
CORD retweeted
Great hearing from @Durhane of @raredisorders and my @GPAinsights colleague @waynedcritchley on the rare disease landscape in Canada, and where we’re at with a national strategy
CORD retweeted
📣 New Brunswick has become the 5th province to have signed an agreement with Health Canada under the National Strategy for Drugs for Rare Diseases! This commitment of over $32 million will help improve access to drugs for #RareDiseases.
The Governments of Canada and New Brunswick announced $32 million over three years to make treatments more accessible and affordable for residents of New Brunswick living with a rare disease: ow.ly/ztX950UH7ml
ALT Image text: Improving access to drugs for rare diseases
CORD retweeted
Join Maureen Smith and Andrea Chow for a webinar on engaging patient partners in CIHR grant applications!
📅 Jan 16, 2025
⏰ 12-1 pm ET
Link to register: events.teams.microsoft.com/e…
ALT Engaging patient partners in your CIHR grant application: Everything you ever wanted to know with Maureen Smith & Andrea Chow (Ontario)
CORD retweeted
On Friday, the Government of Canada and the province of Saskatchewan signed the National Strategy for Drugs for Rare Diseases agreement, committing over $40 million to improve access to new and existing drugs for rare diseases.
Learn more: canada.ca/en/health-canada/n…
CORD retweeted
Did you know? 💡Using exome sequencing (ES) as a first-line test for suspected rare genetic conditions can improve the diagnostic journey.
Read about the new study by the @C4RCanada SOLVE Health Economics team, with contributions from many CRDN members on exome sequencing. 👇
Exome sequencing (ES) as a first-line test for suspected rare genetic diseases increases diagnostic yield, shortens time-to-diagnosis, and reduces testing costs. Our study underscores the benefits of early ES. @UofCr4kids @C4RCanada doi.org/10.1007/s40258-024-0…
CORD retweeted
Lisa McCoy, CEO of Defeat Duchenne Canada, has been in Montreal for the past few days advocating on behalf of the Canadian #Duchenne community at the 2024 Canadian Organization for @raredisorders conference.
Learn more at defeatduchenne.ca
#musculardystrophy
CORD retweeted
Another great panel on barriers to effective patient access to therapies at @raredisorders and RQMO fall conference, including my @GPAinsights colleague @waynedcritchley
CORD retweeted
Packed house for the @raredisorders and RQMO fall conference in #Montreal - great to have @Durhane and #RQMO’s Jonathan Pratt kicking off their first joint conference on Canada’s rare disease strategy #cdnhealth
