Our medical advisory board helps to ensure our charity is communicating correct and relevant information on vascular EDS.
We are extremely grateful for their support and also their commitment towards the planning of our first ever vascular EDS conference which took place in May 2017 and another planned for May 2020.
Annabelle's Challenge is proud to work closely with the NHS EDS National Diagnostic Service based in Sheffield and London.
Dr Glenda J Sobey is co-founder and head of the UK Ehlers-Danlos Syndrome National Diagnostic Service in Sheffield and Honorary Senior lecturer at the University of Sheffield. The service is based at Sheffield Childrens’ Hospital but does see patients of all ages.
Dr Sobey is a Consultant Dermatologist with qualification in Clinical Genetics. Her unit is responsible for the diagnosis of rare and atypical EDS. This includes specialist clinical evaluation, skin biopsy with electron microscopy (where needed) and molecular genetic testing for all known EDS genes in the Sheffield laboratory. This service acts as a full clinical genetics service including genetic counselling. In addition her team advises on and coordinates management of this group of patients. Since 2011, together with cardiology colleagues, she established and runs a specialist Vascular EDS cardiology clinic.
Dr Sobey has an active role in teaching and lectures nationally and internationally. She has published widely. She is particularly interested in promoting early diagnosis in rare diseases to allow optimal outcome for patients and families.
Dr Tim Clayton is a consultant dermatologist based in Manchester. He practices at Salford Royal NHS Foundation Trust and the Royal Manchester Children’s Hospital and is fully trained in both adult and paediatric dermatology.
Dr Clayton is listed on the dermatology specialist register by the General Medical Council in London.
Dr Clayton was named in the top 100 children’s doctors in the Times, one of only three dermatologists recognised in the UK. Tim is an official spokesperson for the British Skin Foundation and has been interviewed regularly on TV and radio.
Dr Clayton is a member of the Royal College of Paediatrics and Child Health and a fellow of the Royal College of Physicians (Edinburgh). He is also a member of the British Association of Dermatologists, the European Academy of Dermatologists, the British Society for Cutaneous Allergy and an executive board member of the British Society for Paediatric Dermatology.
Dr Burrows is a Consultant Dermatologist at Addenbrooke's Hospital NHS Trust Cambridge and also an Associate Lecturer, University of Cambridge Clinical School, Cambridge.
He graduated from St Thomas's, London and trained as a dermatology registrar in London and as a senior registrar in Cambridge. Prior to taking up his consultant post Nigel spent two years at Strangeways Research Laboratories, Cambridge, investigating the molecular genetics of inherited connective tissue diseases. This work culminated in an MD. He continues to see both regional and supraregional referrals for patients with these disorders.
Following a period of clinical and genetic research into EDS with Professor Mike Pope in the mid-1990’s Dr Burrows continues to look after patients with Ehlers-Danlos syndrome. Dr Burrows is also on the medical advisory panel for EDS UK and is involved in clinical research writing several book chapters, as well as lecturing on national courses on EDS. He also runs an EDS clinic in Cambridge and has recently set up a multidisciplinary team approach for our vascular EDS patients
Dr Burrows is committed to raising the profile of EDS amongst dermatologists and other health care professionals.
Jessica Bowen is a genetic counsellor based at the EDS diagnostic clinic at NHS Sheffield Hospital. Jessica provides essential counselling to give people information about genetic conditions and how they are inherited, and they work very closely with clinical geneticists.
Jessica’s role is to help a family to understand better the implications of a diagnosis of a genetic condition in a family. This includes helping the family to understand who else in the family might be at risk and how the condition is inherited. Jessic provides support to our charity with the education of vascular EDS ensuring the content and information we provide is accurate and relevant.
Claire Green is on our medical advisory panel to help ensure that all information regarding vascular EDS is accurately communicated by our charity.
Working closely with Claire we will soon be planning a strategy to help provide resources for families to discuss the diagnosis of vascular EDS with their children.
Claire and the team work at the UK national EDS diagnostic service which is a specialist service for individuals and families who are suspected to have complex Ehlers-Danlos Syndrome (EDS). The service is based in London & Sheffield.
Dr Diana Johnson is a consultant clinical geneticist working with the EDS national diagnostic service and has expertise in vascular EDS.
Dr Johnson has joined our medical advisory panel to help the charity further its objective in providing education of vascular EDS to the medical profession and general public.
Dr Neeti Ghali, MBChB, MD has been working in the EDS National Diagnostic Service since 2011 and is a Consultant in Clinical Genetics. She has seen many patients with rare EDS subtypes and has seen a large number of individuals with vascular EDS over the years.
Neeti initiated the set up of the joint vEDS clinics with cardiology experts in both Great Ormond Street Hospital and St' Bartholemew's Hospital in 2016.is a consultant clinical geneticist working with the EDS national diagnostic service based in London.
Neeti also provided a talk of vascular EDS research at the 2017 Vascular EDS Conference in Manchester and has published 20 papers.
Rebecca is currently the Lead Scientist for the Connective Tissue Disorders Service and is a member of the
Sheffield Diagnostic Genetics Management team working with the EDS Diagnostic Service based at Sheffield Hospital NHS Foundation Trust.
Rebecca joined Sheffield Diagnostic Genetic Service in January 2004 as part of the re-configuration of the Genetic Services in Sheffield. Prior to this she was a Senior Biomedical Scientist at Sheffield Teaching Hospitals.
Rebecca is an Honorary Research Associate at The University of Sheffield and a facilitator for the 'Health Challenge – Local Engagement Global Citizenship' module provided by the Faculty of Medicine, Dentistry and Health.
Rebecca is registered with the Health and Care Professions Council and is a member of the British Society for Human Genetics, the Association of Clinical Genetic Science and the South Yorkshire Institute for Innovation and Research in Child Health. She is also an assessor for the Osteogenesis Imperfecta scheme offered by the European Molecular Quality Network.
Proudly supporting the NHS EDS National Diagnostic Service