Meet our Professional Advisory Board

Professional Advisory Board

The Professional Advisory Board (PAB) provides advice and guidance to our organisation on the identification, funding, and development of research projects related to vascular Ehlers-Danlos Syndrome. The PAB consists of professionals from a variety of disciplines who have extensive knowledge in rare EDS types and related fields.

Members of the PAB also help with the conception, creation, and revisions of our programmes. They bring their professional voice to our website, patient information and conferences and offer insights about patient needs based on what they see in their medical practices.

The professional advisory board also support our VEDS Steering Group, ensuring our work and actions are guided by well-rounded, collaborative insight from two groups who bring different perspectives and a shared passion for improving the outcomes of people living with vascular EDS.

Dr Glenda Sobey

Lead Consultant

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.
Button
Dr Diana Johnson

Consultant Clinical Geneticist

Dr. Diana Johnson, Consultant Clinical Geneticist, is a consultant in the EDS National Diagnostic Service in Sheffield.

In addition to her expertise in the evaluation of patients with rare and complex types of EDS, Dr. Johnson also has a specialist interest in the skeletal dysplasias and dysmorphology, which further complements her role.
Button
Dr Neeti Ghali

Consultant Clinical Geneticist

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 and 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 & 2022 vascular EDS Conferences in Manchester and has published 20 papers.
Button
Jessica Bowen

Genetic Counsellor

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.

Jessica provides support to our charity with the education of vascular EDS ensuring the content and information we provide is accurate and relevant.
Button
Claire Green

Genetic Counsellor

Claire Green is a registered genetic counsellor working in the EDS National Diagnostic Service in Sheffield. Claire specialises in working with individuals and families with the rare types of EDS.

She has extensive experience in this area as the EDS service sees substantial numbers of patients with classical EDS and vascular EDS as well as patients with all of the very rare types of EDS.

In addition, the unit in Sheffield has a specialist combined clinic with the inherited cardiac conditions cardiology team for the ongoing management of patients with vascular EDS and the very rare types of EDS with associated vascular risk. Claire is an integral part of this team attending the clinic appointments of her patients.

She undertakes both undergraduate and postgraduate teaching at the University of Sheffield medical school and has presented the team’s work at national and international meetings.

Claire is also a GCRB registration mentor and supervises MSc students in genetic counselling. Claire has an active research interest in developing interventions to facilitate family communication in vascular EDS and works closely with patient organisations.
Button