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

Health Information and Engagement Manager

Hours – Full time – 35 hours per week

Salary – £29,000-£33,000

Location – Fully Remote – travel required for meetings and conferences.


The Myrovlytis Trust was founded in 2007. Our mission is to drive research, provide support and improve outcomes for patients and their families affected by rare conditions.  Our initial focus is on the rare, genetic condition Birt Hogg-Dubé syndrome which we manage through the BHD Foundation, and the rare cancer osteosarcoma, which we manage through Osteosarcoma Now.


We have an exciting opportunity for an individual to join the team as our Health Information and Engagement Manager. The purpose of this role is to inform and lead the engagement of the communities the Myrovlytis Trust seeks to support through the BHD Foundation and Osteosarcoma Now. To engage and push forward advances in science and treatments we need to build a rich community of patients, clinicians and researchers and provide them with support, information, research funding, advocacy and shine a light on research in the field.


You’ll use your excellent relationship development skills and empathy for patients with rare diseases to understand and represent a broad range of stakeholder needs and help develop the work we do. This role reports directly to the Chief Executive.


If you are looking to further develop your career in the patient advocacy/medical research sector, have strong administrative skills, a keen eye for detail, with a flair for writing and an ability to convey complex scientific concepts to the public, this could be the opportunity you have been waiting for.


You will be entitled 25 days annual leave, bank holidays and additional days leave for a special anniversary (pro rata for part time staff), Employee Assistance Programme and Pension.


To apply for this role, please send a copy of your CV along with a supporting letter outlining your suitability for the post to recruitment@myrovlytistrust.org


For an informal discussion about the role please email alison@myrovlytistrust.org


Health Engagement and Information Manager

Business Plan MT 2021-2024 July 2023

Closing date: 17 September 2023

Interviews:  25 September 2023