Canadian Organization for Rare Disorders

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

04/28/2026

The final agenda for the Rare Disease Day 2026 Conference is now posted!

We’re looking forward to welcoming leaders, advocates, researchers, healthcare professionals, partners, and members of the rare disease community this week for two days of collaboration, innovation, and meaningful discussion.

📅 April 29–30, 2026
📍 Hyatt Regency Toronto

View the final agenda here: https://tinyurl.com/mu9p83e9

This year’s program will focus on sustaining momentum in Canada’s Rare Disease Strategy, advancing access, strengthening evidence, and preparing health systems for the next wave of innovative therapies.

Looking forward to seeing everyone at the conference!

04/15/2026

Canada just made a $1.5B bet on rare disease therapies.
Now, with 15 innovative therapies funded—most requiring real-world evidence (RWE)—the focus must shift to implementation.

We need to ensure ALL rare disease therapies deliver real outcomes for patients. The only way this works is to involve everyone: patients, clinicians, payers, and industry?

Join our April 28 hands-on workshop on Outcomes-Based Agreements (OBA), Managed Access & RWE.

✔ Simulation exercises using the IHE OBA Playbook
✔ Multi-stakeholder learning environment
✔ All experience levels welcome

Registration: https://www.raredisorders.ca/events/upcoming-events/rare-disease-day-pre-conference-workshop

There is no cost to attend, and space is limited to 30 participants, so we encourage you to register early.

04/08/2026

What comes after progress in rare disease drug access?

At the 2026 Rare Disease Day Conference, we’ll be taking the conversation further — looking at what health systems need to have in place so that innovative therapies can be diagnosed, delivered, monitored, and supported in ways that truly benefit patients and families over time.

Conference participants will have the opportunity to engage in workshops on:
• real-world evidence and monitoring
• health-system and care-pathway readiness
• provincial rare disease readiness and practical next steps

Updated Agenda:https://www.raredisorders.ca/uploads/Rare%20Disease%20Day%202026/RDD%20Conference%202026%20Draft%20Agenda_Apr%207.pdf

More info & Registration: https://www.raredisorders.ca/events/upcoming-events/rare-disease-day-2026-conference