The Patient and Family Voice

Amplifying the voices of people with complex lymphatic anomalies (CLA) and their families is critical to advancing research and developing treatments.
Please use this form to share your challenges, worries, and what matters most to you. We encourage the patient and both parents, as well as grandparents and siblings to complete their own form. Your responses will be used to raise awareness and to help guide decisions about the direction of our efforts in research.
Who is completing this survey?
- I am the patient
- Parent/legal guardian of the patient
What is the patient's age?
Where does the patient live?
What is the patient's diagnosis?
- Generalized lymphatic anomaly (GLA) / lymphangiomatosis (with or without bone involvement)
- Gorham-Stout disease (GSD)
- Kaposiform lymphangiomatosis (KLA)
- Central conducting lymphatic anomaly (CCLA)
The most challenging aspect of living with a GLA/GSD/KLA/CCLA is ____________.
I want researchers and doctors to know _____________________.
If treatment could help ____________________ that would make a meaningful difference in our daily lives.
What matters most to me is _______________________.
If you would like the LGDA to contact you with information about future opportunities to share your experiences with medical care and opinions about research, provide your contact information below. (This is optional and will be separated from the other answers you provide on this form.)
Name
First Last
Email