What was a moment that mattered in your rare disease journey?
It could be a missed symptom, a breakthrough in diagnosis, a barrier to treatment, a clinician who listened, or a moment of support that made a difference.
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
Thank you for helping us make rare disease experiences visible and for contributing to a stronger, more patient-centred rare disease system.
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