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

The Myrovyltis Trust promotes research into rare genetic disorders such as Birt-Hogg-Dubé syndrome and rare cancers such as Osteosarcoma.  We have funded more than £6 million in research grants to laboratories around the world. 


We are in a period of reinvigorating the charity, with a new business plan in place along with a new staff team who are committed to the direction the charity is taking.

We are seeking to appoint both a Vice Chair and 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.


Candidates should be aligned to the ethos of the charity and be keen to contribute their expertise to provide governance and support.  We would love to hear from people with a variety of backgrounds to help us develop a diverse board. A scientific or medical background is not essential.  We are particularly interested to hear from individuals with skills in finance, strategy, fundraising, scientific research or governance, as well as those with lived experience of a rare disease


This is an exciting time to be joining a small but agile charity with big plans to expand their remit in the world of rare diseases.


To apply please send a copy of your CV and covering letter to contact@myrovyltistrust.org


For an informal discussion on the roles please email Anna Webb, Charity Director, at anna@myrovyltistrust.org