Initiated by Syndromes Without A Name (SWAN) and galvanized by the Rare and Undiagnosed Network (RUN)'s Undiagnosed Alliance for which the Luka The Lion Foundation is a proud member, Undiagnosed Day raises awareness among the general public and decision-makers about undiagnosed diseases and their emotional, physical, and financial impact on the lives of the patients and their families. Since 80% of rare and undiagnosed diseases have genetic origins, it is imperative to raise awareness for the importance of genetics in the diagnostic odyssey of undiagnosed patients.
- Do you know someone who is undiagnosed and doesn't have access to insurance and/or resources for whole exome sequencing? Click here to explore the SWAN application (completed by a physician) and submit by April 29th for this opportunity.
- For more information about national resources for the undiagnosed disease community, check out Harvard's Undiagnosed Diseases Network funded by the NIH.
- For 11 things we learned, read the Luka The Lion Foundation's article, "To the Parents of a Child Waiting for a Diagnosis" by Founder, Julia Fisher, as published on The Mighty.
- To read Our Rare + Undiagnosed Story: click here