CORD

3.6K posts

CORD

@raredisorders

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 Katılım September 2013

687 Takip Edilen5K Takipçiler

2026 Yıllık Özeti

@raredisorders hesabının Twitter yılını gör

CORD@raredisorders·5d

Webinar 4! From Readiness to Action: The Capstone Consultation Before the Rare Readiness Scorecard Launch 🔗 Register: 3sixtypublicaffairs.zoom.us/webinar/regist… Help shape Canada’s Rare Readiness Scorecard and identify priorities to improve rare disease care. #RareDisease

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CORD@raredisorders·Jul 21

Rare disease patients can’t afford a pause. As Premiers meet at #CouncilOfTheFederation, CORD is urging renewal of Canada’s Rare Disease Drug Strategy before 2027. It’s working—now secure Phase 2. 📄 Read more: bit.ly/4vL35pI #RareDiseases #Canada4Rare

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CORD@raredisorders·Jul 17

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CORD@raredisorders·Jul 16

Congratulations, @Durhane on this well-deserved honour! Thank you to Rare Diseases International (RDI), meaningful recognition of Durhane's lifelong commitment to the rare disease community #RareDiseases #RDI #Canada4Rare #RareDiseasesInternational

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CORD@raredisorders·Jul 15

Join us on July 28 for the third webinar in our summer series. Registration👉3sixtypublicaffairs.zoom.us/webinar/regist…

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CORD@raredisorders·Jul 14

CORD is inviting the rare disease community in Canada, including patients, caregivers, clinicians, researchers, and partners, to complete the Rare Disease Readiness Survey. Survey👉surveymonkey.com/r/CA_Rare_Read…

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CORD@raredisorders·Jul 7

Join CORD for Webinar 2 in the Rare Disease Readiness Dialogues series Registration link: tinyurl.com/2nm48fw2 #RareDisease #HealthPolicy #Canada4rare

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CORD@raredisorders·Jun 26

20Sense Research & Consulting report on accelerated drug access programs in Canada, highlighting recent advances and opportunities within the system, with a focus on accelerated access pathways for rare disease drugs. Link to report: static1.squarespace.com/.../20Sense_Re…

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CORD@raredisorders·Jun 23

We're inviting patients, caregivers, family members, and advocates to share one key moment from their experience. Share your story and help improve diagnosis, care, and support for others. Share your story: surveymonkey.com/r/MKLZGB9

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CORD@raredisorders·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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CORD@raredisorders·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.

The Hon. Dr. Helena Jaczek@HelenaJaczek

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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CORD@raredisorders·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/regist… #RareDiseases #Genomics #HealthPolicy

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CORD@raredisorders·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/26CordBoard

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CORD@raredisorders·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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CORD@raredisorders·May 8

📣 Share Your Voice: Canadian Patient Perspectives on Health Data Sharing 👉 Click on this link to complete the survey: survey.ottawaheart.ca/index.php?r=su…

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CORD@raredisorders·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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CORD@raredisorders·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/upcomin…

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CORD@raredisorders·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/upcomin…

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CORD retweetledi

Loeys-Dietz Canada@LDSFCanada·Mar 23

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