Do you have a rare disease?  Are you a caregiver for a person with a rare disease?

If you’re reading this on the WMFC website, then the odds are that you answered “yes” to one of those questions!

And so CORD, the Canadian Organization for Rare Disorders, needs your input on:

  • The impact of your rare disease on you and your family, and
  • Your perspectives on how Canadian health systems can improve access to rare disease medicines.

They are running a survey for both patients and caregivers to gather your feedback.

The second part of the survey, on policies around rare disease management in Canada, is perhaps the most important.  CORD will use this feedback in submissions and letters to various levels of government, to advocate for the most effective way of ensuring access to medicines for rare diseases.

From the CORD announcement:

In ENGLISH here:
In FRENCH here:

THE SURVEY IS FOR PATIENTS AND CAREGIVERS: If you are a Canadian or resident in Canada affected by rare diseases (patients and caregivers), please take a few minutes to complete this confidential survey conducted by Ipsos Canada on behalf of the Canadian Organization for Rare Disorders (CORD).

WE NEED YOU  patients/caregivers in Canada to SHARE YOUR EXPERIENCE & VIEWS.  This will help healthcare leaders understand what Canadian rare disease patients are experiencing & expect!

WHY THIS IS IMPORTANT: There are  estimated more than 7,000 rare conditions identified in Canada. Rare diseases impact one in 12 Canadians, many of whom are children. Your story and those of others like you will help identify what is working in health and social services for rare diseases, the gaps, and opportunities for making things better in Canada. This survey also provides the rare disease community with a critical voice to help shape policy and decision-making processes to improve access to care and drugs related to rare diseases.


Durhane Wong-Rieger
President & CEO
Canadian Organization for Rare Disorders
Toronto, Ontario M5S 1S4