Social media

Be social! Join us on Facebook and Twitter.


Private support group

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 safe place where patients and parents can share experiences about living with GLA and GSD. This group and the posts made here 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.

Friends & Family Group

The Lymphangiomatosis & Gorham’s Disease Friends & Family Group was created as a place where people can share their experiences related to caring for someone who is living with GLA/GSD. Here we hope family members and close friends of patients will find a place where they are comfortable sharing their experiences in a supportive environment with a group of people who are dealing with the same concerns. Access to this group is through the (parent) of the patient or send a request to

Public page

LGDA has a public page anyone can “like” where we post information about events happening in our community, links to new stories, and links to other things on the internet that may be interesting to members of our community. The LGDA page has over 1600 followers, extending the reach of information about our small community.


You can follow the LGDA on twitter: @LGDAlliance_EU.