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



Anna Webb

Anna Webb

It is with great sadness that the Myrovlytis Trust announces the loss of Dr Anna Webb.   Anna joined the Trust in 2021 as the CEO. Anna came to us with a wealth of experience in the genetic field and a deep passion for helping those with rare conditions gain...
We are seeking to appoint new Trustees

We are seeking to appoint new Trustees

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...
The Myrovlytis Trust appoints a new CEO

The Myrovlytis Trust appoints a new CEO

The Myrovlytis Trust is delighted to announce the appointment of Alison Taylor as our Chief Executive Officer. Alison joins us with a wealth of knowledge as a charity CEO and working in the rare diseases community. Her previous roles include CEO for the Children’s...
Communications Officer

Communications Officer

We have an exciting opportunity for a skilled, outgoing, enthusiastic individual to join our team as a part time Communications Officer.   The successful candidate will be passionate about raising awareness of the charity through our digital channels. They will...
We are hiring

We are hiring

We have an exciting opportunity for an individual to lead the Myrovlytis Trust as our CEO. We are looking for someone who has the skills, experience, and passion to shape and deliver the vision and strategy for the charity’s future. The successful candidate will have...