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

The Myrovlytis Trust promotes research into rare genetic disorders such as Birt-Hogg-Dubé syndrome and rare cancers such as Osteosarcoma. The Trust also incorporates the BHD Foundation and Osteosarcoma Now. We have funded more than £6 million in research grants to laboratories around the world. We are in a period of significant development, with a new CEO and a committed team.


We are seeking to appoint new Trustees who have the experience to promote the charity’s vision, mission, and goals, and assist with strategy development to ensure the charity meets its financial, legal and governance obligations and maximises its impact. The Myrovlytis Trust is a charity and company limited by guarantee. A trustee is also a member and a director of the company. Trustee meetings currently take place virtually approximately three times per year.


The Myrovlytis Trust is a modern progressive charity committed to maximising our long-term impact and developing, with our many partners, approaches and support structures for addressing rare diseases. We would expect candidates to be aligned to the ethos of the charity and be keen to contribute their expertise, while keeping themselves cognitively engaged and developing as trustees and introspecting to maximise their value to the cause. We would love to hear from people with a variety of backgrounds to help us develop a board that is truly diverse, including on skills, experience, career breadth & pattern and cultural background, and shall welcome a spectrum of intellectual diversity that helps us to understand and connect better with the world.  We are particularly interested to hear from individuals with a range of relevant experience of rare diseases with skills in:


  • Finance (with empathy towards working of lean, focussed, public service Institutions like us)
  • HR (with appreciation of small, multi-talent teams with often very highly skilled and multi-skilled team members)
  • Law (with background in disciplines that are likely to benefit a charity registered In England and a promoter of clinical research & wider support in the rare diseases space)


This is an exciting time to be joining an agile, progressive charity with growing impact and value in the world of rare diseases.


To apply please check your legal eligibility to act as a trustee by using this link and then send a copy of your CV and covering letter to recruitment@myrovlytistrust.org


The deadline for applications is 9am on Monday 10th July 2023


For an informal discussion on the role please email Alison Taylor, CEO, at alison@myrovlytistrust.org