Thursday, August 27, 2015

Just Released: The Noonan Syndrome Patient Registry


The Noonan Syndrome Foundation is excited to announce that we have opened a patient registry for individuals with Noonan syndrome and Noonan syndrome with multiple Lentigines (AKA: LEOPARD syndrome).
Registering is easy and free! You can fill out as much information as you can and update your information anytime something changes. Your information is kept secure, and personal information is not shared without your permission.
Here is the link to the registry: https://connect.patientcrossroads.org/?org=noonan
Here a a video from PatientCrossroads talking about the registry: http://vimeo.com/patientcrossroads/short1
Please email us at info@teamnoonan.org with any questions you have regarding the registry.