In 2019 we surveyed members to gather your experiences as an adult patient. As the advocacy organization for complex vascular anomalies, the K- T Support Group is aware of the lack of resources for adults with these conditions. We are working toward recruiting adult providers but we needed hard data from patients to help define where clinical resources are lacking.  Working with Dr. Francine Blei and Dr. Ionela Iacobus, we joined with the LGDA advocacy to develop a survey gathering your experiences as an adult patient. The results were shared with adult hematologists through their website here and will help patients with vascular anomalies in the years to come.

Thank you to all participants. Our responses came from those over 18 diagnosed with any complex vascular anomaly (K-T, CLOVES, CM-AVM, Parkes Weber, FAVA, Servelle Martorell, CM with overgrowth, etc.) Your help was very appreciated. 

If you would like a glimpse at some information, check the poster prepared for ISSVA here.

Page last updated June 9, 2020