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About Lymphangioleiomyomatosis (LAM)
There are 7,000 known rare or orphan diseases. By definition, an orphan disease affects less than 200,000 people. This means that collectively, one in 10 Americans are diagnosed or live with a rare disease.
LAM is one of the 7,000 and one of only 500 that has a treatment, but no cure. Progress to find treatments and cures for these diseases is slow because populations are small and research is often ignored. In the case of LAM, some 1,400 American women and 3,500 globally have been diagnosed.
LAM is a progressive lung disease that primarily affects young women and causes pulmonary cyst formation, small airway obstruction and eventually, respiratory failure.
Investment in LAM and rare disease research is vital and contributes to discoveries in other diseases such as cancer and diabetes.
About The LAM Foundation
Over the last 20 years, The LAM Foundation has raised more than $23 million, primarily raised by women suffering with LAM and their families, and has directed the majority of those funds toward research. Seed investments by the Foundation in basic and clinical research have been leveraged to $40 million in funding from other sources, including the National Institutes of Health. The result of this investment makes LAM one of the 500 rare diseases that has a treatment, but the search for the cure continues.
As a patient advocacy organization, The LAM Foundation has been recognized as a “good model to emulate,” in the New England Journal of Medicine, 2011, and has been called, “the model for rare disease” by The National Institutes of Health. The Foundation is also special in that its founder is a woman whose daughter is affected by the disease; it is primarily supported by a tight network of women who have LAM and continues to be led by a female executive director as well as a female board chair.
The LAM Foundation Awareness Video