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
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⏰ Final reminder: Survey closes Sept. 9!
Patients & caregivers affected by lysosomal storage disorders are invited to share the financial impact of living with these conditions.
✅ 10–15 min | 🔒 Anonymous
Take the survey: survey.alchemer-ca.com/s3/50…
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Join us to help shape the next generation of rare disease care in Canada.
Register & learn more: raredisorders.ca/events/upco…
#RareDisease #Canada4Rare
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Please join us in welcoming François-Olivier Théberge to CORD Board
As General Manager of Ataxia Canada François-Olivier brings valuable experience in rare disease advocacy and patient support.
#RareDisease #Canada4Rare
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Patients and caregivers are invited to participate in a confidential Canadian survey exploring the financial impact of rare disease.
⏱ 10–15 min
🔒 Anonymous
👉survey.alchemer-ca.com/s3/50…
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Webinar 4!
From Readiness to Action: The Capstone Consultation Before the Rare Readiness Scorecard Launch
🔗 Register: 3sixtypublicaffairs.zoom.us/…
Help shape Canada’s Rare Readiness Scorecard and identify priorities to improve rare disease care.
#RareDisease
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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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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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Join us on July 28 for the third webinar in our summer series.
Registration👉3sixtypublicaffairs.zoom.us/…
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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_R…
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Join CORD for Webinar 2 in the Rare Disease Readiness Dialogues series
Registration link: tinyurl.com/2nm48fw2
#RareDisease #HealthPolicy #Canada4rare
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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/.../…
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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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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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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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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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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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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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📣 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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