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

About Us

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.

Vision

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.

Education and Advocacy

Having a rare disease can be an isolating and anxiety-inducing experience. The journey to a diagnosis can be long and winding, and with a diagnosis comes new questions. It can be hard to find a doctor who understands the condition, and patients often become their own best advocate. We strongly believe that by forming communities connecting patients, researchers and clinicians we can drive innovations in research and support and empower patients.

Through the BHD Foundation we have established a template for support, research and innovation in the rare disease field, which we intend to replicate in our work on osteosarcoma and eventually expand to a range of conditions. We believe that by establishing a comprehensive information source, regular meetings, clearly explaining the science and involving patient groups at every stage we will work more effectively to improve the outlook for patients.

You can download a summary of our work building the BHD community here.

Research

Our research strategy is guided by a simple overarching framework; to bring together researchers, clinicians and patients in collaborative multi-disciplinary projects which drive forward new technologies and potential therapies. We have a particular interest in immunotherapies and new routes to treatment.

The following principles guide the Myrovlytis Trust’s research strategy:

  1. Relevance to the treatment or cure of rare diseases.
  2. Potential to improve the prognosis and quality of life of people affected by rare diseases.
  3. Evidence that funding cannot be suitably obtained elsewhere.
  4. Originality and excellence of science.
  5. Dissemination of research to the scientific community through publication of results, and to the wider population through public engagement in line with the aims of the Myrovlytis Trust to bring clinicians, researchers and patients together to advance the field.
  6. Potential of new advances in technologies and tools in the clinic to be applicable to other related rare diseases.

You can read our full research strategy here.

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