Alfie’s Trust has a host of activity on social media aimed at providing a place for sufferers of Lymphangiomatosis and Gorham’s Disease and their loved ones to come together and share their experiences.
Take a look at our social media options and feel free to get in touch if you’d like more information or if you’d like to join our social media support groups.
Private Support Group
This group was setup for adult patients and the parents of patients under the age of 18. This group is run by Alfie’s Trust and the LGDA and was created as a safe place where patients and parents can share experiences about living with Lympahngiomatosis and Gorham’s Disease. The group and its content will not show up in searches and anyone who is not an approved member won’t be able to see anything posted here. Membership to this private group is by invitation only. If you’d like to join, send a request to ku.gr1553073449o.enl1553073449imeif1553073449la@yc1553073449art1553073449.
Friends & Family Group
The Lymphangiomatosis & Gorham’s Disease Friends & Family Group was created as a place where people can connect and share their experiences as carers for someone who is living with Lymphangiomatosis or Gorham’s Disease. 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. To join, please send a request to ku.gr1553073449o.enl1553073449imeif1553073449la@yc1553073449art1553073449
Alfie Milne Lymphangiomatosis Trust is a public page which can be found through the search bar. Any person can go on and “like” the page. This is where we post information about events happening in our community, links to new stories and other things that may be of interest to members of our community and supporters. Visit the page to see latest news and updates from Alfie’s Trust.
You can follow us on @AlfieMilne.