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 and Osteosarcoma Now.
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 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, 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.
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