Driving research, providing support and improving outcomes for patients and their families affected by rare conditions

Mission and Vision

The Myrovlytis Trust is a charity (UK Charity Commission number 1122073) founded in 2007 to promote research into rare conditions, and advance education of the public in medical and molecular genetics.


Driving research, providing support and improving outcomes for patients and their families affected by rare conditions


The Myrovlytis Trust mission is to transform the outlook for rare conditions. With an initial focus on Birt-Hogg-Dubé syndrome and osteosarcoma, the trust strategically funds research directed towards new treatments. We want to ensure that patients gain access to the same state-of-the-art technologies, breakthroughs and therapies as those with more common disease.

Education and Advocacy

Having a rare condition 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 conditions field, which we intend to replicate 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.

Osteosarcoma Now was developed with the sole purpose of supporting osteosarcoma patients and their families throughout their cancer journey, wherever they live in the world. ONTEX, our clinical trial explorer was designed so that patients have the tools and information to explore new treatment options and make decisions that are right for them.

View our milestones to see what we have achieved so far.




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 conditions.
  2. Potential to improve the prognosis and quality of life of people affected by rare conditions.
  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 conditions.

You can read our full research strategy here.



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