We are thrilled to welcome Krysta Davies Foss as a new board member and to celebrate the re-election of Jida El Hajjar to our Board of Directors.

We are supporting @CCRANORG’s national survey to better understand the needs of young adults with cancer. Just a few minutes of your time can help improve age appropriate cancer care and support services across 🇨🇦. Take the survey here:

📢 @Durhane response in @GlobeDebate to @picardonhealth Is denying a drug to a terminally ill 10-year-old cruel – or is it good governance? .

Researchers at SickKids are seeking youth w/ rare diseases & caregivers for virtual focus groups on finding med & clinical trial info. 📩 michelle.wang1@sickkids.ca

Be part of Canada’s rare disease transformation!.Scholarships + hotel rates available. Visit the event page for full details, the draft agenda, and registration info:.

Advocate calls for changes to how B.C. decides to fund drugs for rare diseases via @VancouverSun.

CORD applauds BC’s Health Ministry for reinstating access to Charleigh’s medication putting the expertise of her physician and family first. This is true patient-centred care, backed by evidence and compassion.

CORD calls on Canada's Premiers to invest in comprehensive rare disease programs by using $1.4 billion federal funding for more drugs. It's time for action not just talk! Media Release 🔗.#RareDisease #cdnpoli.

BC Ministry “Terminates” Life-Sustaining Treatment for Rare Disease Child: CORD Calls for Immediate Reversal

Join the movement to improve Sickle Cell Disease care in 🇨🇦!. Bill S-201 paves the way for a national framework to support those living with SCD, their families & caregivers. Sign the petition & help make change happen:.

Canada’s Drug Agency are welcoming patient and clinician input for our review of newborn screening for early-onset metachromatic leukodystrophy (MLD). Link to Information on Website:

RT @CanadianRDN: 👏 Congrats to Dr. Lawrence Korngut, CRDN Steering Committee member, on a $553K grant from @BrainCanada to expand CNDR int….

Policymakers need real data to make informed decisions about rare disease policy in Canada. That’s where YOU come in. If you’re living with a rare disease or caring for someone who is, your experience is crucial. Survey link:  

Still Time to Apply: Call for Nominations for CORD Board of Directors! . Join the CORD Board of Directors and help lead change for the rare disease community. We’re seeking skilled, committed Canadians in finance, policy, comms & more. Apply by June 30 👉

Policymakers need real data to make informed decisions about rare disease policy in Canada. That’s where YOU come in. If you’re living with a rare disease or caring for someone who is, your experience is crucial. Take the survey 👉

Survey Fixed! Deadline now June 22!. Had trouble with the Canadian Rare Disease Survey? Tech issues are fixed—please try again! 💬 Your voice matters. 👉 Take/retry now: 🔁 Share to spread the word!

Join the CORD Board of Directors (2025–2028) and help lead change for the rare disease community. We’re seeking skilled, committed Canadians in finance, policy, comms & more. Apply by June 30 👉 #RareDiseases #Canada4Rare

Canadian Organization for Rare Disorders.For more information, to confirm your eligibility, and to learn how to join the study, please complete this short survey 👉 or email Wubalem at wmuch034@uottawa.ca with the subject line, “Clinical Trials Study”

Living with a rare disease impacts every part of life. In Canada, your voice can spark real change. Share your experience in this survey to help push for better support, funding & policies. 👉 Take the survey: