Online Support


There are two ways for patients to communicate using facebook. LGDA has a public page anyone can “like”
where we post information about events happening in our community, links to new stories on our website,
and links to other things on the internet that may be interesting to members of our community. The LGDA
page has over 1000 followers, extending the reach of information about our small community.

The URL for the LGDA facebook page is:


For adult patients and the parents of patients under the age of 18 we maintain a private facebook
group. This group was created as a place where patients and parents can share experiences about living with
lymphangiomatosis and Gorham’s disease. This group and the posts made there will not show up in searches and
no one who is not an approved member will know who is in the group or be able to see anything posted
here. Membership is by invitation only. If you are interested in joining the group, send a request to and we will share with you the invitation process.