CORD

Excited to welcome Sang Mi Lee to lead our CORD Pre-Conference Workshop on April 28! Apply here: surveymonkey.com/r/FT8B972

For more information about the conference and registration, visit: raredisorders.ca/events/upcomin…

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…

Ontario becomes the first province to publicly reimburse the first targeted oral therapy for adults with Grade 2 I... prn.to/4aSAaHI

Join us tomorrow at noon for our Rare Disease Day Webinar! Registration: us02web.zoom.us/meeting/regist…

Rare Disease Day is fast approaching. Don't forget to take a look at the updated list of 🇨🇦 illuminations for #LightUpForRare 📎raredisorders.ca/rare-disease-d…

Registration: us02web.zoom.us/meeting/regist…

Save the Date:

Registration: us02web.zoom.us/meeting/regist…

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/toolk…

To learn more or join the study, please contact: delard@exafield.ca

Pour en savoir plus ou participer à l’étude, veuillez nous contacter: E-mail: delard@exafield.ca

🚨 Exciting news in pediatric cancer research! @M4KPharma and Agora Open Science Trust have nominated M4K2009 as the lead candidate for a therapy targeting DIPG, a rare childhood brain cancer. m4kpharma.com/newsandblogs/a…

"Incredible 2 days at the Rare Disease Conference Fall 2025 in Ottawa! Thanks to everyone who joined—both in person & online. Special thanks to our sponsors for making it possible! #Canada4Rare

Thank you to all who attended our Breakfast on the Hill this morning! Canada’s #RareDisease Strategy has delivered positive results for new meds – let’s keep it up & make real progress now on screening & diagnosis, paving the way for Phase 2 with renewed funding in 2027!

CORD delivers an important message this morning at its press conference on Canada’s #RareDisease Strategy: “It’s an investment Canada can’t afford to stop if we want to ensure Canadians with rare disorders get the care they need and deserve” – Durhane Wong-Rieger, CORD

👏 A special thank you to our speakers Jida El Hajjar @raredisorders & Sabrina Millson @Revs4Rett & event MP co-sponsors @tomkmiec @coteau @luctheriaultbq for helping make our Breakfast on the Hill event a huge success

New @IpsosCanada survey shows the uphill battle RD patients face -14 clinician visits before an accurate diagnosis. 🇨🇦 Canada’s RD Strategy must now focus on better screening, diagnosis, and care, not just access to meds. 📎newswire.ca/news-releases/…

La Stratégie nationale visant les médicaments pour le traitement des maladies rares de 1,5 milliard de dollars du ... prn.to/4ofiXgc