Canadian Organization for Rare Disorders

10/08/2026

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 how this could help give babies the best health outcomes

Learn more: https://infantstudy.mygeneticsadviser.com/en/access/

10/06/2026

CORD’s Annual Fall Conference brings together patients, caregivers, clinicians, researchers, government, industry and community leaders to help shape the next phase of rare disease care in Canada.

The two-day program will explore practical ways to improve diagnosis, treatment, coordinated care, data and community support.

We’re thrilled to welcome an amazing lineup of speakers, including:

Mike Ellis — Legislative Assembly of Alberta Assembly of Albert
Josie Godfrey — RareCare / Realise Advocacy
Kelly Robinson — Health Canada
Suzanne McGurn — Canada’s Drug Agency - L'Agence des médicaments du Canada
Mauro Chies — pan-Canadian Pharmaceutical Alliance
Dr. Thierry Lacaze — RareKids-CAN
Michael Mackley — IWK Health

We’ll also hear from Natasha Hepburn, who will share her son’s treatment journey and her family’s advocacy to secure access to treatment.

Representing the patient community, Susi Vander Wyk, Cure SMA Canada, Ruchi Ambike, IgAN Canada Hub, Josie Sirna, Thalassemia Foundation of Canada, Rachel Brothers, Amyloid Action Canada - alongside many more advocates and rare disease leaders.

And this is just a glimpse of the speakers joining us. Explore the full agenda to see the complete lineup and sessions.

Draft Agenda: https://tinyurl.com/5ctpbck7

Can’t join us in person? Virtual participation is also available, so you can take part from wherever you are.

👉 Group hotel rate available for conference attendees
👉 Networking reception included with in-person registration
👉 Patient/Patient group scholarships available, including travel and virtual options

To register and for more information: https://www.raredisorders.ca/events/upcoming-events/cord-fall-conference-2026

10/05/2026

IgAN Canada Hub, co-founded by Ruchi Ambike and Dr. Alexandra Cambier, is excited to announce their launch on Monday, November 23rd at 11 a.m. in Montreal, Quebec. This nonprofit is aimed at providing support, resources and advocacy to Canadians with IgAN. We extend this invitation to patients and their families, industry partners, and clinicians.

For more information visit: https://igancanada.ca

10/02/2026

On October 23rd and 24th, 2026, the PSP Society of Canada will bring together people living with PSP, C*D and MSA, their families and care partners, healthcare professionals and researchers for our 2026 Family Conference in Toronto.

Over two days, we’ll share knowledge, hear from leading experts, connect with others who understand the journey, and explore practical ways to live a full life with Progressive Supranuclear Palsy (PSP), Corticobasal Degeneration (C*D), or Multiple System Atrophy (MSA). Whether you’re personally affected by one of these conditions, supporting someone who is, or working to improve care and understanding, we’d love to have you with us. Over the coming days we’ll be sharing details about our incredible agenda featuring world class speakers discussing the key issues impacting families daily. Every presentation includes dedicated time for questions from the audience.

Conference Details: October 23rd and October 24th,
2026 Hyatt Place Toronto Airport 29 Carlson Ct,
Etobicoke, ON M9W 6A5,

Learn more and get your tickets:
https://www.pspsocietycanada.ca/event-details/family-conference

10/01/2026

Webinar 2: When Innovation Rewrites the Pathway

📅 October 16, 2026
🕛 12:00 PM ET

How can Canada prepare for the new pathways that come with rare and precision therapies?

In Webinar 2, we’ll look at what Phase 2 of Canada’s Rare Disease Drug Strategy could mean for screening, diagnosis, eligibility, expertise, treatment delivery, patient choice and ongoing monitoring.

Speakers:
Kim Steele, Cystic Fibrosis Canada
Susi Vander Wyk, Cure SMA Canada
Audrey Belouin, Canadian Association of Pompe (TBC)

Registration link: https://us02web.zoom.us/meeting/register/DQvgL3g9TC2aV61a00ydvw

09/24/2026

Sometimes in rare disease, it really does feel like a miracle.

The miracle of a treatment that offered Nathan hope when options in Canada had been exhausted.

The miracle of his mother Natasha, who found that expertise in Germany and refused to stop fighting for her child.
The miracle of hundreds of donors who made Nathan’s first treatments possible.

And now another extraordinary step: Natasha has shared that the B.C. government will provide one-time funding toward Nathan’s out-of-country treatment.

CORD celebrates this decision — and everyone who helped make it possible.

But Nathan’s story also reminds us of something important: families facing ultra-rare conditions should not have to rely on miracles, fundraising and extraordinary advocacy to reach the specialized care they need.

We need pathways capable of responding to exceptional patients when expertise and effective treatment exist beyond our borders.

Today, however, we celebrate Nathan. Keep going.

https://www.youtube.com/shorts/PUODb8_PYg8

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

09/23/2026

What does it take to turn rare disease policy into better outcomes for patients?

Join CORD at Next Generation Rare Canada 2026 for a conversation with Josie Godfrey, Canadian policy leaders, clinicians and patient advocates about what Canada can learn from England’s rare disease experience and how we can improve the patient journey from diagnosis to treatment and access.

Draft agenda:https://l1nq.com/nsr5qwk

👉 Group hotel rate available for conference attendees
👉 Networking reception included with in-person registration
👉 Patient/Patient group scholarships available, including travel and virtual options

To register and find out all the details, visit: https://www.raredisorders.ca/events/upcoming-events/cord-fall-conference-2026

09/22/2026

Speakers Announced: How Readiness Is Built: Lessons from Canadian Rare Disease Pathways | Sept. 29

Registration link: https://us02web.zoom.us/meeting/register/NR8q7yz1SE-ymSUIYAVZxA #/registration

08/31/2026

Join patients, caregivers, clinicians, researchers, government, industry and community leaders as we come together to shape the next generation of rare disease care in Canada.

Through patient stories, interactive discussions and collaborative sessions, we’ll identify practical priorities for improving diagnosis, treatment, coordinated care, data and community support and help shape a Next Generation Rare Canada Action Portfolio.

A discounted group rate is available at the Delta Hotels Halifax Downtown for conference attendees.

CORD is also offering a limited number of travel and virtual scholarships to support participation.

Conference Outline:
https://www.raredisorders.ca/uploads/Events/Fall%202026%20Conference/CORD%20Fall%202026%20Conference%20Outline.pdf

Registration, hotel information and scholarship applications:
https://www.raredisorders.ca/events/upcoming-events/cord-fall-conference-2026

08/26/2026

Please join us in welcoming François-Olivier Théberge to CORD Board of Directors

As General Manager of Ataxie Ataxia Canada, François-Olivier brings extensive experience in rare disease advocacy, patient support and partnerships. Following his son’s diagnosis with Friedreich’s ataxia, he turned his focus to rare disease advocacy and improving patient care.