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



We are delighted to announce our current grant awardees, spanning the fields of Birt-Hogg-Dubé Syndrome (BHD) and osteosarcoma.

The Myrovlytis Trust re-established grant giving activity in 2021, with the first round of funding decided upon by our grant review panel following rigorous peer review. We have funded BHD projects looking at the prevalence of BHD using large-scale genomic databases, a study to identify new or linked manifestations of BHD, and a detailed single-cell analysis of the tumour microenvironment for the skin manifestation.

In the osteosarcoma field, we have funded a pre-clinical study to assess the activity of a humanised antibody against sFRP2 in combination with other therapies for the treatment of metastatic disease, and a study looking at the role of oncolytic virus-based activation of Natural Killer cells for treatment of osteosarcoma.

Communicating the science

An important component of all research we fund will be the communication of these projects to various audiences. We intend to provide plenty of opportunites for researchers to engage with the rare disease community, the public and other researchers. We have recently funded a science communication course for PhD students in BHD and osteosarcoma to equip the next generation with the necessary tools to be excellent communicators and ambassadors.

Meet our grant awardees

The lead investigators have produced a lay summary and a video to introduce their research projects, listed below. Please take some time to hear about the interesting avenues and potential impact of these studies by following the links below.

BHD research

Dr Arjan Houweling, Amsterdam UMC, The Netherlands
Improving Care for Birt-Hogg-Dubé Syndrome Patients: Clinical and Genetic Analysis of an Unique Cohort

Learn more about Arjan’s research project here.

Dr Neil Rajan, Newcastle University, UK
Delineating the Cutaneous Tumour Microenvironment in Birt-Hogg-Dubé Syndrome
Learn more about Neil’s research project here.

Professor Stefan Marciniak, University of Cambridge, UK
Determining the Prevalence of Pathogenic FLCN Variants from Large Genomic Registries
Learn more about Stefan’s research project here.

Osteosarcoma research

Professor Nancy DeMore, Medical University of South Carolina, USA
Combination Therapy with a Humanized Monoclonal Antibody to Secreted Frizzled Related Protein 2 for Metastatic Osteosarcoma
Learn more about Nancy’s research project here.

Professor Graham Cook and Dr Fiona Errington-Mais, University of Leeds, UK
Oncolytic Virus-based Activation of Natural Killer Cells for the Immunotherapy of Osteosarcoma
Learn more about Graham and Fiona’s research project here.