Canadian Organization for Rare Disorders

What was a moment that mattered in your rare disease journey?

We are inviting patients, caregivers, family members, and advocates to share one short story about a key moment in their rare disease journey through Moments That Matter: Rare Disease Journeys.

Your story can be brief, we are simply asking for one moment that others should understand.

You may choose to submit your story with your name or anonymously. You will also be able to indicate how your story can be used.

Stories will be used by CORD to support advocacy efforts and may inform submissions to policy makers, healthcare leaders, webinars, meetings, conferences, and reports.

Share your story here: https://www.surveymonkey.com/r/MKLZGB9

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.

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.

We call them rare diseases, but they cumulatively affect over 3.2 million Canadians. Our government has committed $1.4 billion under the National Strategy for Drugs for Rare Diseases to improve access to affordable and life-saving treatments—but there's more that needs to be done. Today, I spoke about the issue in the House. To learn more, please see: tinyurl.com/yc78k2pz

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