Mission

Provide support, education and hope to patients and families affected by lymphangiomatosis and Gorham’s disease. That is our mission.

Just as important is to promote basic and clinical research on the cause of lymphangiomatosis and Gorham’s disease and support the development of effective diagnosis, identifying the effective treatment and ultimately a cure for these diseases.

In order to realise its mission, the LGD Alliance Europe does the following:

  • Raise general public awareness and distributes comprehensive information on lymphangiomatosis and Gorham’s disease.
  • Offer support and hope for patients and families by enabling to make contact with others.
  • Assist patients and their family members by providing general information on these diseases and contacts to the doctors and clinical centres with experience treating these patients.
  • Maintain internet pages for patients, families, healthcare professionals and the general public.
  • Work with umbrella organizations for rare diseases, the European Community and other rare disease health organizations to advocate for rare disease policies and research funding collaboration.
  • Promote research to achieve a more active approach towards developing and executing a research strategy and program for the study of GLA/GSD.

 

Many of the activities are planned and executed in cooperation with the Lymphangiomatosis & Gorham’s Disease Alliance, Inc. (LGD Alliance), a US-based 501(c)(3) public charity. You can visit their website at www.lgdalliance.org.