Meet the team
We are all in this together.
The LGDA Europe is a non-profit organisation to give hope and find help to all who are affected by this disease. We work with volunteers only. An Executive Committee directs the efforts of LGDA Europe.
Meet our team:
Her youngest son was diagnosed with lymphangiomatosis in 2004 where her journey began to find a way to help her son. She became a Board Member of the LGDA and started an affiliation, Alfie’s Trust, to help and support their work. She is Chair of the board of the Lymphangiomatosis and Gorham’s Disease Alliance – Europe and Patient Support Leader for the European Community.
Her daughter was diagnosed with lymphangiomatosis at the age of five. As for many patients, the route to diagnosis was long and demanding.
His son Bo (4) was diagnosed with lymphangiomatosis in 2013. Co-founder of LGD Alliance Nederland.
Mother of Ella (13) who was diagnosed with kaposiform lymphangiomatosis in 2013. Co-founder of LGD Alliance Nederland.
Her son Sete (4) was diagnosed with Gorham’s disease at the age of 4 months (2012). She is co-founder of LGD Alliance Belgium.
PD Prof. Dr. Jochen Rössler, Germany – Medical Advisor
Prof. Dr. Rössler is researcher in Freiburg (Universitätsklinikum Freiburg) at the department of Pediatric Hematology/Oncology. For many years he offers his support from a medical perspective to the LGD Alliance Europe.
Prof. Dr. Mark Post is vascular specialist and famous for his contributions on the development of lab grown meet. He works on Maastricht University. He is ambassador and general advisor for the LGD Alliance Europe since 2015.
His daughter Jana Sheets founded the American LGD Alliance after being diagnosed. Unfortunately she died in 2010. Jack Kelly, President of the LGDA, has dedicated his life to achieving the missions and goals of the LGDA to give hope to others in Jana’s memory.
Become a volunteer
You can become a volunteer and/or a representative for a European country. Once every two months we meet online.
It is also possible to help us with specific tasks like translating the website to your language or keep track of scientific developments. For these two task it is also possible join us as an intern.
We would be happy to answer your questions if there are any. Contact us at email@example.com or at one of the national charities for more information.