Driving research, providing support and improving outcomes for rare disease patients and their families


We are a medical research charity driven by our ambition to cure rare diseases.


We provide information and support to patients and raise awareness among clinicians and the public  to transform the outlook for rare diseases.

We are…

The Myrovlytis Trust is a charity founded in 2007 to promote research into rare  disorders, advance education of the public in medical and molecular genetics and pursue new technologies enabling treatment where there is a clear unmet clinical need.

We passionately believe that no one should be disadvantaged because they have a rare disease and we provide support, drive research and improve outcomes for patients and their families.


Rare Genetics Disorders

We have a long standing interest in rare genetic kidney disorders, particularly Birt-Hogg-Dubé syndrome. We fund research, provide support to patient groups and raise awareness through the BHD Foundation.

Rare Cancers

We are interested in advancing research and identifying novel therapies in rare cancers. Our initial focus is on osteosarcoma, where there is an urgent clinical unmet need to improve prognosis.

Immunotherapies and New Routes to Treatment

We are actively exploring the use of immunotherapy in rare diseases with the aim of funding research to bring novel and effective therapies to the clinic.



Osteosarcoma Institute
Bardo Foundation
Rare Revolution Magazine
Gene People logo
Sarcoma Patient advocacy Global Network

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