Dedicated to sharing information and connecting families, clinicians, and researchers interested in KCNK9 Imprinting Syndrome, also known as Birk-Barel Syndrome.


Our Beginning

Patients and their doctors often struggle with finding and coordinating even basic treatment or research following a rare disease diagnosis, like KCNK9 Imprinting Syndrome. This website, created by a patient family, will serve as a portal for patients, families, clinitians, and researchers interested in KCNK9 Imprinting and the related TASK-3 Channel. 


“95% of rare diseases have not one single FDA approved drug treatment.”

This is us!

This is us!



of rare diseases do not have a disease specific foundation supporting or researching their rare disease


of children with rare & genetic diseases will not live to see their 5th birthday