Assessing Care Experience for Adult Patients with Vascular Anomalies
As the advocacy organization for the rare vascular anomalies of GLA/lymphangiomatosis, GSD, and KLA, the LGDA is aware of the lack of resources for adults with these conditions. We are working on recruiting adult providers but we need hard data from patients to help define where clinical resources are lacking.
We have developed a survey to gather your experiences as an adult patient. The results will be analyzed and published and will help patients with vascular anomalies in the years to come.
If you are a patient 18 years of age or older, please help us gather information by completing this survey. Click here to begin.
Participation is voluntary and is anonymous.
This survey was closed in August 2019. Preliminary data compilation has been completed and submitted for consideration of presentation as a poster at an upcoming medical conference in the United States.
Many thanks go to those who took time to complete the anonymous survey. Stay tuned for more developments!