CORD Mission: Provide a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders.#Canada4Rare
Joined September 2013
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- Followers 5,014
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1,103 Photos and videos
Jun 8
Nice article highlighting Chloe’s use of theatre to raise awareness of bladder exstrophy through her original play, Exstrophy.
St. Patrick's production of Exstrophy earns provincial DramaFest honours for choreography and original script beachmetro.com/2026/06/04/st…
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Jun 4
MP Jaczek has long been a champion for Canada’s rare disease community. On behalf of CORD, thank you for recognizing rare disease heroes and calling for continuation of Canada’s Rare Disease Drug Strategy, which has helped save lives.
We call them rare diseases but they cumulatively affect over 3.2M Canadians. We've committed $1.4B under the National Strategy for Drugs for Rare Diseases to improve access to affordable & life-saving treatments—but there’s more to be done. I spoke about the issue in the House.
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Jun 2
Join us for Webinar 1 on June 23 with featured guest @DonHusereau exploring the shift from genomic testing readiness to rare disease system readiness and what’s next for Canada’s Rare Disease Strategy.
Register:us02web.zoom.us/meeting/regi…
#RareDiseases #Genomics #HealthPolicy
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Jun 1
Join CORD's Board of Directors!
We're seeking passionate leaders with experience in governance, advocacy, fundraising, finance, health policy, communications, and more to help advance the rare disease community in Canada.
Apply 👉surveymonkey.com/r/26CordBoa…
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May 29
Looking forward to joining the discussion on Canada’s Rare Disease Strategy key findings from a national study. Experts from CORD, IHE, CHEO/ThinkRare & CHRIM.
Register: longwoods.com/events/leaders…
#RareDisease #RareDiseaseStrategy #Canada #HealthEquity
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May 8
📣 Share Your Voice: Canadian Patient Perspectives on Health Data Sharing 👉 Click on this link to complete the survey: survey.ottawaheart.ca/index.…
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Apr 27
Final agenda for Rare Disease Day 2026 is now live!
Join us April 29–30 at the Hyatt Regency Toronto for two days of collaboration on Canada’s Rare Disease Strategy, access, evidence, and health system readiness.
View agenda: tinyurl.com/mu9p83e9
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Apr 15
There is no cost to attend, and space is limited to 30 participants, so we encourage you to register early.
Registration: raredisorders.ca/events/upco…
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Apr 8
At #RareDiseaseDay2026, we’ll explore real-world evidence, system readiness, and provincial rare disease readiness with workshops focused on practical next steps.
Join the conversation: raredisorders.ca/events/upco…
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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
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Mar 3
Excited to welcome Sang Mi Lee to lead our CORD Pre-Conference Workshop on April 28!
Apply here: surveymonkey.com/r/FT8B972
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Mar 3
For more information about the conference and registration, visit: raredisorders.ca/events/upco…
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Feb 28
Today is Rare Disease Day.
A day to raise awareness of rare diseases and the millions of people worldwide living with them. Together, we shine a light on the need for earlier diagnosis, better care, and equitable access to treatments.
youtu.be/7J1oTfoIOGw?si=Sv0B…
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Feb 27
Ontario becomes the first province to publicly reimburse the first targeted oral therapy for adults with Grade 2 I... prn.to/4aSAaHI
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Feb 26
Join us tomorrow at noon for our Rare Disease Day Webinar!
Registration: us02web.zoom.us/meeting/regi…
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Feb 25
Rare Disease Day is fast approaching. Don't forget to take a look at the updated list of 🇨🇦 illuminations for #LightUpForRare
📎raredisorders.ca/rare-diseas…
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Jan 30
New resource 🧬 from @MRCTCenter (Brigham & Women’s Harvard): LTFU Toolkit v2.0 for gene therapies.
Practical, patient-centered guidance for long-term follow-up—designed to reduce burden and improve data quality.
👉 mrctcenter.org/resource/tool…
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