Driving research, providing support and improving outcomes for rare disease patients and their families



Science Communication Training Course

Science Communication Training Course

We are delighted to announce a fully funded science communication training course for PhD students working in BHD or osteosarcoma. The course will provide students with the tools to present and discuss their work with a variety of audiences. We see this as a key skill...
Our Work Experience at the Myrovlytis Trust

Our Work Experience at the Myrovlytis Trust

Guest blog post by Mariné, Leila and Sofia. Our work experience team consisted of two psychology undergraduate students (Mariné and Leila) and a school student studying art and design (Sofia). We are grateful to have had the opportunity to work with the Myrovlytis...
2021 BHD Symposium Report

2021 BHD Symposium Report

October saw the first ever virtual BHD Symposium, and we were delighted to welcome speakers, chairs and 293 attendees from across the globe for two days of research updates and discussion. In this report we highlight the current research conducted into BHD and look to...
Sarcoma Awareness Month

Sarcoma Awareness Month

This July we were delighted to take part in Sarcoma Awareness Month and attend a series of lectures run by Sarcoma UK which brought together clinicians, researchers and patients in the sarcoma community to share their knowledge and experience. This report shares with...
BHD Explainer Video

BHD Explainer Video

The Myrovlytis Trust is delighted to launch their new Birt-Hogg-Dubé Syndrome (BHD) Explainer Video. BHD is a rare genetic condition that causes fibrofolliculomas (benign skin lesions), lung cysts, pneumothoraces and kidney cancer. 600 families have been diagnosed...