Ways you can help

As a patient you can help yourself and others with this disease. How?


We would like you to register in two different registries, both with their own goals, and both important for the study of lymphangiomatosis and Gorham’s disease.


Become a donor.

If a biopsy has been taken or you plan to have one, your tissue can be used for further research.


Share your story.

You can raise more awareness by sharing your story online.