Canadian Organization for Rare Disorders

06/17/2026

CCRAN 4th Annual Pan-Tumour Biomarkers Conference is just around the corner—there’s still time to register!

This important two-day virtual event is free to attend and brings together patients, clinicians, researchers, and policy leaders advancing precision oncology and comprehensive genomic profiling.

Join virtually on June 18–19, 2026, for two days of thought-provoking discussions, expert insights, and community connection.

📅 June 18–19, 2026
💻 Virtual and free to attend

Register here: https://www.ccran.org/biomarkers-registration

CCRAN gratefully acknowledges our patient group partners. Their support helps highlight diverse patient perspectives and share crucial insights with those affected by cancer. We deeply appreciate their commitment to improving cancer care and advancing access to precision oncology for all Canadians diagnosed with metastatic cancer.

Join us virtually on June 18–19, 2026, for two days of thought-provoking discussions, expert insights, and community connection.

📅 June 18–19, 2026
💻 Virtual and free to attend
✨ New this year: sessions with real-time translation into French and several other languages

👉 Register for free: http://bit.ly/biomarkers26

06/09/2026

Are you the parent of a child with a rare disease? RareKids-CAN needs your help to improve the information we offer about clinical trials. To participate in an interview on Zoom, please contact [email protected].

To learn more about the study, please visit www.rarekidscan.com

06/08/2026

Want to learn more about Canada's National Rare Disease Strategy? Join this webinar on June 12 at 12 p.m. EST Durhane Wong-Rieger will be sharing key findings from Canadian Organization for Rare Disorders recent national study, and the actions needed to strengthen Canada's National Rare Disease Strategy.

Registration link: https://www.longwoods.com/events/leadership-discussion

We look forward to being part of this important conversation.

Registration link: https://www.longwoods.com/events/leadership-discussion

Join on June 12 at 12 p.m. EST as we examine key findings from Canadian Organization for Rare Disorders's recent national study, and the actions needed to strengthen Canada's National Rare Disease Strategy.

Hear from:

· Durhane Wong-Rieger – Canadian Organization for Rare Disorders (CORD)
· Rebeccah Marsh – Institute of Health Economics
· Dr. Cheryl Rockman- Greenberg – Children's Hospital Research Institute of Manitoba
· Alexandre White-Brown – CHEO and ThinkRare

Moderated by Karen Heim, General Manager of Alexion Canada.



This content is intended for Canadian audiences.

06/04/2026

Thank you Helena Jaczek raising awareness of rare diseases in the House today and for highlighting the continued need to strengthen, fund, and advance the National Strategy for Drugs for Rare Diseases. We appreciate your ongoing commitment to improving access to life-saving care and treatments for the rare disease community.

06/02/2026

Join us for Webinar 1 on June 23 featuring Don Husereau (University of Ottawa) and Durhane Wong-Rieger (CORD) as they discuss the transition from genomic testing readiness to rare disease system readiness, and explore how to shape the next phase of Canada’s Rare Disease Strategy.

Register now: https://us02web.zoom.us/meeting/register/W-sp9cjqQMaK_uN-7vKXNQ

06/01/2026

📣 CORD is seeking passionate leaders to join its Board of Directors for the 2026–2029 term.

Help shape the future of Canada's rare disease community.

📅 Nomination deadline: June 30, 2026

Apply today: www.surveymonkey.com/r/26CordBoard

Applicants must be Canadian residents and current CORD members.

Please share with your networks.

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05/29/2026

We look forward to being part of this important conversation.

Registration link: https://www.longwoods.com/events/leadership-discussion

Join on June 12 at 12 p.m. EST as we examine key findings from Canadian Organization for Rare Disorders's recent national study, and the actions needed to strengthen Canada's National Rare Disease Strategy.

Hear from:

· Durhane Wong-Rieger – Canadian Organization for Rare Disorders (CORD)
· Rebeccah Marsh – Institute of Health Economics
· Dr. Cheryl Rockman- Greenberg – Children's Hospital Research Institute of Manitoba
· Alexandre White-Brown – CHEO and ThinkRare

Moderated by Karen Heim, General Manager of Alexion Canada.



This content is intended for Canadian audiences.

05/12/2026

Applications are now open for the CRDN RAREvolution
Scholarship.

This opportunity supports students aged 17 to 29 living with a diagnosed or suspected rare disease as they pursue post-secondary education in Canada in Fall 2026.

Apply now: https://canadianrdn.ca/scholarship/

05/08/2026

📣 Share Your Voice: Canadian Patient Perspectives on Health Data Sharing 👉 Click on this link to complete the survey: https://survey.ottawaheart.ca/index.php?r=survey/index&sid=679293&lang=en

If you or your loved one has interacted with the Canadian healthcare system, we want to hear from you! We’re inviting individuals aged 18+ to participate in a Canada-wide survey exploring how health data should be shared for research. Your insights can help shape future policies and practices and ensure patient perspectives are at the center of decision-making. Participation is completely voluntary, and every response makes a difference.

📣 Faites entendre votre voix : le point de vue des patients canadiens sur le partage des données de santé 👉 Cliquez sur ce lien pour répondre au sondage : https://survey.ottawaheart.ca/index.php?r=survey/index&sid=679293&lang=fr

Si vous ou l’un de vos proches avez déjà eu affaire au système de santé canadien, nous aimerions connaître votre avis ! Nous invitons les personnes âgées de 18 ans et plus à participer à une enquête nationale visant à déterminer comment les données de santé devraient être partagées à des fins de recherche. Vos commentaires peuvent contribuer à façonner les politiques et les pratiques futures et à garantir que le point de vue des patients soit au cœur du processus décisionnel. La participation est entièrement volontaire, et chaque réponse compte.

05/05/2026