Pressure groups remain the best weapon in the struggle for recognition of lymphatic malformations and their treatment. We are confronted by the obvious frustration of medical research funding.

Lymph malformations fall under the generic heading of “Lymphangiomas” which affect children and adults of both sexes and all ethnic groups.  Their common factor is that they affect the development of the wall of the lymph vessel, affecting both superficial and profound lymph vessels.   They are now classified, but cover a multitude of very diverse pathologies, because of their various forms, their degree of severity and in terms of existing possibilities of treatment.

The first step towards further research and more fundamental clinical work requires that health professionals, the general public and policy makers be made much more aware of the problems faced by families and researchers.  The rare researchers into these pathologies suffer from a cruel lack of financial funding.

According to the key figures provided by the Alliance for Rare Diseases – a rare illness concerns only one person in 2000 in Europe, affects 3 million people in France, of whom 75% are children and 80% of cases present a genetic origin.  The average time for diagnosis takes 4 years!

Late diagnosis or wrong diagnosis, a roaming mission in search of a diagnosis, followed by   the rarity of hospital centres for treatment -  these are the problems faced by patients with lymphatic malformation.  Their struggle means that they suffer additional physical, psychological and social consequences and often feel that no-one is interested in their case. This complex pathology involving the lymph vessels motivates only a few rare researchers and professionals who are dedicated and passionate in their quest to understand the origins and causes of lymph malformation.

This is why we believe that the Lymphangioma Association needs to have an impact on the future of care and treatment of lymph malformation by, for example, raising funds to finance a fundamental research project on lymph and its malformations; also we need to advance the progress of work engaged in clinical research, but also campaign for the recognition of alternative therapies which can enhance and improve the quality of life of the patients.

This means that we have to inform the public at large, the health professionals, the politicians and public bodies in France and throughout Europe.  The association campaigns alongside all concerned in order to find solutions for the treatment of Lymphatic Malformation.

The Lymphangioma Association (L’Association Lymphangiomes – A.M.L.A) unites various partners (including businesses, other associations, individual donors, public figures, politicians and sports personalities), all of whom support our actions and help us to raise funds for research

 

This is the motto of those specialist teams who believe that any surgical intervention should be decided by an entire multidisciplinary team with sufficient experience and knowledge of lymphatic malformations to anticipate any possible consequences which could be serious and irreversible.

What do we mean by MULTIDISCIPLINARY ?  
We mean a team composed of all specialities, such as radiologists, ORL specialists, surgeons, dermatologists, gastro-enterologists, pneumologists, psycho-therapists….  

Lymphatic malformations are not particularly rare, but their complex forms are both rare and difficult to treat.