European LAM Federation
The Creation of the European LAM Patient Federation
Lymphangioleiomyomatosis - LAM is a degenerative and invariably fatal lung disease which affects women in their child bearing years. The cause of LAM remains unknown in spite of growing international knowledge of its genetic and cellular behaviour.
The disease significantly and progressively impairs respiratory function, leading to the formation of cysts in the lungs and subsequent destruction of healthy lung tissue.
Difficult to pronounce and even more difficult to diagnose, LAM is often confused with other respiratory conditions, including asthma and bronchitis.
There is no effective treatment and no cure in sight. Women who are victims of this disease makeup statistics collected by individual international patient organisations; these figures suggest that up to one in eight women per million population are affected.
Women with LAM have taken part in Clinical Trials in the USA using the drug sirolimus; results were published in the New England Journal of Medicine in March 2011, however a cure for LAM continues to be sought with much urgency in Europe and around the world. Trial results indicate that in some patients, sirolimus may have some effect in slowing down the abnormal progression of LAM.
Following on from the first European LAM Research Conference, held in Udine, Italy in November 2010, and looking forward to a second Conference to be held in Barcelona, Spain, in September 2012, collaboration of LAM Patient and Research groups within Europe, aims to create a European LAM Patient Federation by a target date of December 2012.
The newly formed European LAM Patient Federation will focus on supporting LAM research and will coordinate communication with existing LAM patient groups.
The Federation will work together to raise funds for ongoing scientific investigation, will coordinate and collect Europe wide data and will establish a European LAM Tissue Bank; the new Federation will bring together and will collaborate with research teams working internationally.
The European LAM Patient Federation will work closely with Eurordis, the European Rare Disease Organisation. Working to find a cure for LAM and strengthening the resolve to bring countries within Europe together on this issue is seen by patients and researchers as an urgent public health issue.
Laying the groundwork and the creation of the Federation is our first priority; this initiative, from LAM Italia offers hope to women with LAM in all European countries and seeks a mandate to draw up and implement a plan of action.
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We seek support for this initiative from established and new LAM Patient Organisations in Europe as well as from individuals and groups involved in LAM research.