As another resource for families, KIF1A.ORG wishes to connect our community with the most talented and enthusiastic clinicians in the world who support our KAND community. We hope to foster the concentration of patients’ ongoing care needs into the hands of the most capable, engaged and motivated clinicians.

With the information provided to us by our caregiver and patient community, a global directory of clinicians, who are highly regarded in our community, has been established as an available resource when new families join our community or for those in need of recommended options within their geographical location.

Our KAND Clinician Directory is generated by recommendations from KIF1A families. While KIF1A.ORG cannot endorse specific specialists, we hope this list serves as a helpful resource as you search for the best possible care team for your family. If you would like to provide us with your input, please complete the survey so we can continue to grow this resource over time!


The average rating of clinician provided is based on a scale of 1 to 5 (1: Unsatisfactory or Not At All Knowledgeable, 3: Neutral, 5: Satisfactory or Knowledgeable).

Use the search and zoom functions to find clinicians in your area. If there are multiple clinicians working in the same city or medical facility, you may need to zoom in close on the map to see multiple entries. View KAND Clinician Map in a full screen map.