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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Canada’s rare disease strategy is working. Now it’s time for Phase 2!
With agreements expiring in March 2027, CORD urges governments to renew $500M in annual federal funding to improve treatment access and care.
🔗 Read CORD’s open letter:raredisorders.ca/uploads/Doc…
#Canada4Rare
Join the INFANT study to screen your baby for 200+ rare, treatable conditions. INFANT is a research study looking at a new kind of newborn screening using DNA to detect more conditions than standard newborn screening.
Learn more 👉 infantstudy.mygeneticsadvise…
IgAN Canada Hub, co-founded by Ruchi Ambike and Dr. Alexandra Cambier, is excited to announce their launch! This nonprofit is aimed at providing support, resources and advocacy to Canadians with IgAN.
For more information visit: igancanada.ca
The @PSPSocietyCDA is hosting its 2026 Family Conference on October 23–24 in Toronto, bringing together people living with PSP, CBD and MSA, their families and care partners, healthcare professionals and researchers.
Learn more and get your tickets:pspsocietycanada.ca/event-de…
Join us for Webinar 2: When Innovation Rewrites the Pathway on Oct 16!
Registration link: us02web.zoom.us/meeting/regi…
@CFCanada @CureSMACanada
⏰ 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…
Join us to help shape the next generation of rare disease care in Canada.
Register & learn more: raredisorders.ca/events/upco…
#RareDisease #Canada4Rare
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
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…
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
🤖 Made with AI
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
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
Join us on July 28 for the third webinar in our summer series.
Registration👉3sixtypublicaffairs.zoom.us/…
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…
Join CORD for Webinar 2 in the Rare Disease Readiness Dialogues series
Registration link: tinyurl.com/2nm48fw2
#RareDisease #HealthPolicy #Canada4rare
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/.../…
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
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…
