Lymphangiomatosis & Gorham’s Disease Alliance Europe is an entirely voluntary organization. We don’t have any hired staff for administration or management. All the work and tasks of LGD Alliance Europe are completed by volunteers and active representatives of the patients and
The efforts of LGD Alliance Europe are directed by an Executive Committee, elected yearly by the patient and family community. The aim is to have a wide representation including several European countries. To support the work of Committee, a medical advisor participates in the decision-making process. Also, to reinforce ties and cooperation with our US-based sister organization, a member of the LGD Alliance can participate in the meetings of the LGDAE Executive Committee. The members of our first Executive Committee are:
Titta Anttila, Finland
Titta Anttila is a mom of three from the town of Oulu in Northern Finland. Their daughter, now 6 year old, was diagnosed with lymphangiomatosis at the age of five. As for many patients, the route to diagnosis was long and demanding. Titta has MSc degree of environmental engineering from the University of Oulu. She is working part time and the rest of the day is used for pursuing doctor’s degree. Her spare time activities are filled with kids and their hobbies, involvement into organizational activities of development cooperation and into the house and a garden.
Matthias Collier, Germany
Matthias Collier lives in Leipzig / Germany. His daughter was diagnosed with Gorham’s disease as a baby at the age of 10 month and died 8 month later. He still tries to help others fighting this rare disease with his knowledge as a computer scientist working at the Coordination Centre for Clinical Trials Leipzig.
Anonymous Young male, United Kingdom
J was diagnosed with lymphangiomatosis in the intestines in 2009 at the age of 29, after many years of being told he had something else. The diagnosis was a shock. Dealing with the psychological blow was almost as difficult as the physical symptoms. Nonetheless he continues to work full time as a civil servant in London. He also tries to enjoy outdoor sports as much as his condition and time allow.