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

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.

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.

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 patients gain access to the same state-of-the-art technologies, breakthroughs and therapies as those with more common diseases, and work collaboratively with a variety of organisations to achieve this.

The Trust incorporates both the BHD Foundation (www.bhdsyndrome.org) and Osteosarcoma Now (www.osteosarcomanow.org).

We have funded more than £6 million in research grants to laboratories around the world.

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, HR, law (in particular intellectual property), fundraising, scientific research, 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@myrovlytistrust.org

For an informal discussion on the roles please email Anna Webb, CEO, at anna@myrovlytistrust.org.

We will be interviewing candidates as applications arrive, so please be sure to contact us at the earliest opportunity.