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

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...
Call for research proposals

Call for research proposals

The Myrovlytis Trust is pleased to launch its call for research proposals dedicated to gene therapy for the rare monogenic disorder Birt-Hogg-Dubé syndrome.     Submission deadline for proposals: 30th August 2021, 5pm (BST)  Rationale   Gene therapies have the...