Join the LGDA Patient Matching Program

About our Patient Matching Program

Lymphangiomatosis and Gorham’s disease are extraordinarily rare conditions and a strong support system is invaluable in helping patients and their families cope with the diagnosis and living with the conditions. One way the LGDA assists patients and families in finding this support is by facilitating introductions to others.

Using our patient registry forms and other resources our patient support team looks for patients of similar age; undergoing the same or similar treatment; and/or living nearest to one another and, when both sides are agreeable, makes introductions. Because the conditions are so rare, an exact match is unlikely, but we do try to find the closest match for each situation. Many of these matched patients and families form strong bonds and report tremendous relief in knowing they are not alone and having someone with whom they can share their feelings, hopes, fear, and frustrations. Some components of our patient support resources, such as our Facebook page and Discussion Forum also provide a way for our patient community to interact and offer support to one another, but patient matching fosters the formation of the close relationships that are critical in helping people to cope with these rare conditions.

We also provide the matching assistance for families who have lost a loved one to one of these diseases.

If you are interested in participating in the Patient Matching Program, please complete and submit the Patient Matching Registration form and someone from our support team will contact you when we have located a potential patch.