Support for patients and their families

Our Community

Welcome. Together with the LGDA US and LGDA – Europe we are bringing our community together.  We’re growing and we’re glad you found us. Our community includes patients, their families and friends, physicians, and members of other organisations dedicated to supporting research into Lymphangiomatosis and Gorham’s Disease.

Have you or has a family member been diagnosed with Lymphangiomatosis or Gorham’s Disease? We are here to help you and your family finding the support you need, providing you and your doctors with knowledge and to have hope for the future.

How can we help?

You must have a million questions, or maybe you don’t have any because you don’t know where to start. You have come to the right place for help.

Living with a rare disease is a daily learning experience for patients and families. You have to deal with doctors, specialists, nurses, hospitals, pharmacies, transport, school, work, friends, and neighbours and so on. And then we don’t even mention the pain, grief, fear and anger you are dealing with as well.

These diseases are difficult to understand, so your family, friends and loved ones will struggle to understand it too.