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

The Team


Charity Manager: Anna Webb 

After completing a PhD at the MRC Human Genetics Unit (now IGGM) in Edinburgh, Anna undertook postdoctoral research at UCL before moving to scientific publishing (Acquisitions Editor then Senior Editor of a medical genomics journal). She also gained several years of conference and events experience before joining the Myrovlytis Trust.

Email: anna@myrovlytistrust.org

Charity Officer: Jazzmin Huber

Following a degree in Cancer Biology and Immunology at the University of Bristol and a Medical degree at the University of Birmingham, Jazzmin worked as a Doctor for the NHS, before joining the Myrovlytis Trust as a Charity Officer in February 2021.

Email: jazzmin@myrovlytistrust.org

Charity Officer: Katie Nightingale

Katie completed her PhD at the Roslin Institute in Edinburgh before moving to the University of Cambridge to undertake her postdoctoral work. She joined the Myrovlytis Trust as a charity officer in May 2021. 

Advisory Board

Professor Eamonn Maher

MD FRCP FMedSci, Professor of Medical Genetics and Genomic Medicine at  the University of Cambridge, UK. Professor Maher’s work focuses on human genetic disorders. Current research interests include inherited and non-inherited kidney cancers, such as VHL and BHD syndrome.

Dr Laura Schmidt

PhD, Principal Scientist at the National Cancer Institute, NIH, USA. Dr Schmidt’s research focuses on identifiying new genes involved in familial renal cancer. Dr Schmidt was part of the teams that cloned the VHL tumor suppressor gene, and that identified mutations in Folliculin, the gene mutated in BHD syndrome.

Professor Andrew Tee​

PhD, Research Lecturer at the Institute of Medical Genetics of Cardiff University School of Medicine, UK and AICR fellow. Dr Tee leads a research group investigating the cellular mechanisms underlying tuberous sclerosis complex and BHD syndrome, particularly the activity of a key protein called mammalian target of rapamycin (mTOR).

Professor Arnim Pause 

PhD, Associate Professor in the Department of Biochemistry and Canada Research Chair in Molecular Oncology at McGill University, Canada. Professor Pause’s research interests include the functional characterization of the Folliculin protein in C.elegans and mouse models.

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