Share Your Story

SIDM wants to understand the patient experience of getting a diagnosis. What worked? What did not work? By hearing from you — as a patient or a family member— we hope to increase our understanding of ways to improve diagnosis. 


If you would like to share your story with SIDM, please click here to fill out our survey.




We welcome feedback on this resource. Please help the SIDM Patient Committee to improve this resource by sending your comments to

Click here to return to the Patient Resource Page.