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About us
Who we are
The Myrovlytis Trust is a charity (UK Charity Commission number 1122073) founded in 2007 to promote research into rare diseases, and advance education of the public in medical and molecular genetics.
More than 7000 rare diseases have been described, affecting 300 million people globally. It takes, on average, over 4 years for an individual to receive a diagnosis, and even then, only 400 of these diseases have an approved treatment. We passionately believe that no one should be disadvantaged because they have a rare disease.
By providing information and support to patients, raising awareness among clinicians and the public and strategically funding research, the Myrovlytis Trust aims to transform the outlook for rare diseases. With an initial focus on two conditions (Birt-Hogg-Dubé Syndrome and Osteosarcoma), we fund research directed towards new treatments. We want to ensure that these patients gain access to the same state-of-the-art technologies, breakthroughs and therapies as those with more common disease.
The overall goal of the Myrovlytis Trust is to provide support, drive research and improve outcomes for patients and their families.
