Help us identify the challenges, breakthroughs, and practical changes that can improve rare disease care and support.
This survey is conducted by the Canadian Organization for Rare Disorders (CORD). CORD is a registered charity representing patient organizations and individuals living with rare disorders.
We are asking patients, caregivers, family members, and advocates to share one key moment from their rare disease journey. This may be a challenge, a turning point, an achievement, or a small change that made — or could have made — a meaningful difference. These stories will help us identify where rare disease infrastructure needs to improve, from diagnosis and specialist referral to treatment access, clinical care, community resources, and ongoing support
These moments may include experiences related to:
first symptoms or initial screening,
getting a diagnosis,
referral to a specialist,
access to treatment,
clinical care and follow-up,
community resources and support,
school, work, family, financial, or emotional impacts,
advocacy, peer support, or personal achievements.
You may answer only the questions you are comfortable answering. Please avoid including information about other people unless you have their permission.
We would like to use the personal experiences, either anonymized or identified based on permissions given, to help provide a real portrait of the challenges and breakthroughs living with rare disease in Canada. No personal identification will be shared without the explicit consent of the person living with the rare condition or caregiver with authority to do so.
Thank you in advance for sharing and for you support. If you wish addiitional information, please contact us: info@raredisorders.ca.
Estimated time: 8–12 minutes.
