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Medical Advisory Board

Meet our Medical Advisory Board for the Ectodermal Dysplasia Society.

Our Medical Advisory Board includes:

  • 4 Dermatologists
  • 2 Ophthalmologist
  • 2 Geneticists
  • 4 Dentists
  • 2 Ear Nose and Throat Consultant
  • 1 Appearance Psychologist
  • 1 Human Applied Physiologist
  • 1 Lecturer in Sport, Exercise and Health Science

Our Medical Advisory Board assist the ED Society in helping to find medical professionals close to your home who have an understanding of Ectodermal Dysplasia.  They are in close liaison with the Society to help answer the many questions raised.

The Medical Advisory Board give their time voluntarily, for which the ED Society is most grateful.

Medical research projects are being undertaken worldwide and our Medical Advisory Board are involved in many projects.

Please take a look at the medical page for more information.

Trustee Dr. Angus J. Clarke, DM, FRCP, FRCPCH  - Professor in Clinical Genetics, School of Medicine, Cardiff UniversityDr. Angus J. Clarke, DM, FRCP, FRCPCH  – Professor in Clinical Genetics, School of Medicine, Cardiff University

Coming from a background in Paediatrics, Angus has worked in Clinical Genetics at Cardiff since 1989, with particular interests in ectodermal dysplasia and Rett syndrome, the genetic counselling process and the social and ethical issues around human genetics. He has authored or edited ten books, often with colleagues, and numerous research papers and book chapters. He has directed the Cardiff University MSc course in Genetic Counselling since it was launched in 2000. He contributes to policy discussions – he was a member of the Human Genetics Commission – and the writing of reports for the British and European Societies of Human Genetics.

Angus has actively supported the UK Ectodermal Dysplasia Society and Rett UK and is working to develop clinical trials of novel treatments for both conditions as well as supporting the societies and their members.

Professor John Hobkirk, BDS(Hons) Dunelm, PhD, DrMedhc, FDSRCSEd., FDSRCSEng, MIPEM, CSci, FHEA - Emeritus Professor, University College London

Professor John Hobkirk, BDS(Hons) Dunelm, PhD, DrMedhc, FDSRCSEd., FDSRCSEng, MIPEM, CSci, FHEA – Emeritus Professor, University College London

John Hobkirk trained in the UK and Sweden, moving to the Eastman Dental Institute and Hospital in London as Senior Lecturer and Consultant in 1976. He subsequently became Professor and Chairman of the Restorative Division at the Eastman. He has special interests in dental implantology and the management of hypodontia, and in 1977 founded probably the world’s first multi-disciplinary clinic for the treatment of this condition. Many of his trainees subsequently went on to establish similar clinics elsewhere in the UK. He has published widely, including six textbooks, one of which, written with the Eastman’s hypodontia team, is a world’s first on hypodontia. Since retirement he has continued to publish and teaches regularly on international graduate programmes. He has been a member of the Society’s Medical Advisory Board since 2000 and maintains its Hypodontia Clinic data base – A Dentists Tale – 2021

Professor John A McGrath, MD, FRCP - Professor of Molecular Dermatology, King’s College LondonProfessor John A McGrath, MD, FRCP – Professor of Molecular Dermatology, King’s College London

 

 

Dr E Jones, MA, MB. BChir, MRCP, PhD - Consultant in Clinical Genetics Central Manchester University HospitalDr E Jones, MA, MB. BChir, MRCP, PhD – Consultant in Clinical Genetics Central Manchester University Hospital

Dr. Jones was born and educated in the North-West of England.  She studied medicine at the University of Cambridge (1989-1995) and undertook post-graduate training in Medicine (1995-1998).  She was awarded a Welcome Trust training fellowship and completed her PhD at the Institute of Genetic Medicine, Newcastle upon Tyne (1998-001).  She completed her medical training in clinical genetics and spent a further two years as a post doctoral research fellow.  She was appointed as a Consultant Clinical Geneticist in Genetic Medicine, Manchester in 2008.  Her specialist interests include genetic conditions that effect the skin and tuberous sclerosis complex.

Liz has over twenty years experience of teaching in both mainstream and special education. Her research interests include poststructuralist theory; feminist theory; social constructions and deconstructions of ‘the child’ and ‘childhood’. Liz leads the Centre for the Cultural Studies of Children and Childhood, which is affiliated to the Educational and Social Research Institute.

Professor Michael J. Tipton - Professor of Human & Applied Physiology, Extreme Environments Laboratory, Department of Sport & Exercise Science, University of Portsmouth, UK.Professor Michael J. Tipton – Professor of Human & Applied Physiology, Extreme Environments Laboratory, Department of Sport & Exercise Science, University of Portsmouth, UK.

Educated at the Universities of Keele and London, Professor Tipton joined the University of Surrey in 1986. After 12 years at the Robens Institute and European Institute of Health and Medical Science he moved to the University of Portsmouth in 1998. In addition to his University positions, Professor Tipton was based at the Institute of Naval Medicine (INM) from 1983 to 2004 and was Consultant Head of the Environmental Medicine Division of the INM from 1996. He has spent over 35 years researching and advising the military, industry and elite sports people in the areas of thermoregulation, environmental and occupational physiology and survival in the sea. He has published over 550 scientific papers, reports, chapters in these areas as well as the books, “The Essentials of Sea Survival” (Golden & Tipton, 2002) and “The Science of each Lifeguarding” (Tipton & Wooler, 2016).
Professor Tipton has been a consultant in survival and thermal medicine to the Royal Air Force and UKSport; he recently completed 10 years on the Royal National Lifeboat Institution’s Medical & Survival Committee and is now a member of their Council. Prof Tipton has been a member of the Ectodermal Dysplasia Society’s medical advisory board since 2005. In 2004 Prof Tipton was made an Honorary Life Member of the International Association for Safety & Survival Training in recognition of his work in sea survival. He chaired

Trustee Mr. Colin E. Willoughby, BSc. (Hons), MBChB (Hons), MD, FRCOphth - Consultant Ophthmalmic Surgeon, Professor of OpthalmologyMr. Colin E. Willoughby, BSc. (Hons), MBChB (Hons), MD, FRCOphth – Consultant Ophthmalmic Surgeon, Professor of Opthalmology

Professor Colin E Willoughby is Professor of Ophthalmology in Ulster University and a Consultant Ophthalmic Surgeon in the Belfast Health and Social Care Trust in Northern Ireland. Colin underwent his ophthalmology training in the Mersey Deanery and was Clinical Lecturer in the University of Liverpool. During this post he developed a clinical and lab-based research interest in ectodermal dysplasia and ocular surface and was awarded a Doctorate of Medicine from the University of Liverpool in 2004 for his work. Colin has also trained in clinical and laboratory ocular genetics in the Hospital for Sick Children in Toronto and spent 9 years as Senior Lecturer at the Centre for Vision and Vascular Science at Queen’s University Belfast. He was Professor of Ophthalmology at the University of Liverpool (2013-2017) and was part of the corneal and glaucoma service in St Paul’s Eye Unit, Royal Liverpool University Hospital. His research theme is to apply genomic medicine to ophthalmology and develop molecular therapies. The main focus of this research is to improve the understanding, diagnosis and treatment of two major worldwide blinding disorders: corneal blindness and glaucoma.

Dr Gabriela Petrof MBBS, MRCP(UK), PhDDr Gabriela Petrof MBBS, MRCP(UK), PhD

Gabriela Petrof underwent specialist Dermatology training in London and the West Midlands. She studied 3 years towards a PhD in cell therapies for individuals with dystrophic epidermolysis bullosa awarded by King’s College London. She holds a substantive Paediatric Dermatology Consultant post at Great Ormond street hospital where she is part of the Nationally Commissioned Highly Specialised Service for Epidermolysis Bullosa. She has published in highly cited peer-reviewed journals, including the Journal of Investigative Dermatology and the American Journal of Human Genetics.

Mr Mike Harrison, BDS (Cardiff), MScD, FDS (Paed Dent), RSC, MPhil  - Consultant in Paediatric Dentistry Guy’s and St Thomas’ NHS Foundation TrustMr Mike Harrison, BDS (Cardiff), MScD, FDS (Paed Dent), RSC, MPhil  – Consultant in Paediatric Dentistry Guy’s and St Thomas’ NHS Foundation Trust

Mike Harrison carried out his specialist training in Paediatric Dentistry in Cardiff then Guy’s Hospital, London. He studied dental genetics at the Institute of Child Health before holding academic and clinical posts at the Eastman Dental Institute, King’s and Cardiff dental hospitals. He is currently a Consultant at St Thomas’ Hospital and the Evelina London Children’s Hospital.

He was author of the first UK national clinical guideline for the use of general anaesthesia in paediatric dentistry, and chaired the Paediatric Dentistry Clinical Effectiveness Committee.  Mike lectures internationally on dental genetics and dental care for children with medical or genetic problems. He sees a large number of children with ED as part of the Guy’s and St Thomas’ Dental Hospital Hypodontia team to provide the best possible smile from infancy to young adulthood.

Miss Claire Forbes-Haley, BDS, MJDF, RCS, FDS, RCS Res - Consultant in Restorative Dentistry and Lead for Developmental Dental Abnormalities for University Hospital Bristol Trust.Miss Claire Forbes-Haley, BDS, MJDF, RCS, FDS, RCS Res – Consultant in Restorative Dentistry and Lead for Developmental Dental Abnormalities for University Hospital Bristol Trust.

 

 

Sajjad Ahmad MB BS, FRCOphth, PhD Sajjad Ahmad MB BS, FRCOphth, PhD –

Sajjad is a consultant ophthalmic surgeon at Moorfields Eye Hospital (London, UK) and an honorary associate professor at the UCL Institute of Ophthalmology (London, UK). His clinical interest is in rare hereditary and inflammatory diseases of the eye surface and cornea. His research interests are in stem cell biology of the cornea, using the laboratory science to develop therapies for the cornea. ​

Mike Saunders, MD, FRCS, Mb, ChB – Consultant in Otolaryngology, Lead Clinician for Children’s ENT, University Hospital Bristol TrustMike Saunders, MD, FRCS, Mb, ChB – Consultant in Otolaryngology, Lead Clinician for Children’s ENT, University Hospital Bristol Trust.

Mike is very fortunate to be able to spend a large part of his working life with children in such an enormously rewarding field. He trained at Bristol University medical school, graduating first in his year in child health. After starting specialist training in ENT surgery he developed an interest in children’s ENT problems while working as a Senior Registrar at Bristol Children’s Hospital. He subsequently spent 6 months of his higher specialist training at Great Ormond Street Hospital in London, followed by a year’s fellowship in paediatric ENT at the New Children’s Hospital in Sydney.

JulianMr Julian Gaskin MBChB, DOHNS, FRCS (ORL-HNS) – Paediatric and Adult Consultant ENT Surgeon ENT (Otorhinolaryngology, Head and Neck Surgery)

Mr Gaskin qualified as a doctor in Leicester and completed his ENT registrar training in the East Midlands.  He undertook a specialist 12 month fellowship in paediatric ENT at the Royal Manchester Children’s Hospital, one of the largest children’s hospitals in Europe, undertaking in particular advanced paediatric airway procedures.

Kirsten Fitzgerald  BDentSc, Ms (Texas), FFD (RCSI), Diplomate of American Board of Paediatric Dentistry- Consultant Paediatric Dentist, Our Lady’s Children’s Hospital, Crumlin, Ireland

Kirsten Fitzgerald  BDentSc, Ms (Texas), FFD (RCSI), Diplomate of American Board of Paediatric Dentistry- Consultant Paediatric Dentist, Our Lady’s Children’s Hospital, Crumlin, Ireland

Kirsten qualified from Dublin Dental School, Trinity College, Dublin with the class of 2000. Following a period of time in general practice and community dentistry, she undertook formal training in paediatric dentistry in Dallas, Texas. There she pursued her clinical training in a combined university and hospital setting, and ultimately attained a Masters degree from Baylor College of Dentistry. Her research examined undergraduates’ clinical experiences in paediatric dentistry using a qualitative approach. She completed the American Board of Paediatric Dentistry exam process in 2007 and has served as Consultant Examiner to the Board for the Oral Clinical Examination. She is a Fellow of the Faculty of Dentistry of the Royal College of Surgeons in Ireland.  In her primary clinical role, she is one of two consultant paediatric dental surgeons at Ireland’s largest paediatric hospital, Our Lady’s Children’s Hospital, Crumlin, providing secondary and tertiary care services to children with complex medical, physical and behavioural needs, and for children with congenital craniofacial differences. She teaches postgraduate students in paediatric dentistry and students in dental hygiene, dental nursing and orthodontic therapy both at the Dublin Dental University Hospital and at the children’s hospital. Her special interests are in providing restorative care for adolescents and young adults with advanced dental problems, in motivational interviewing as a communication style, and in educating the wider healthcare community on the basics of oral health.

Dr Heather Massey PhD, MSc, BSc (Hons), FHEA– Senior Lecturer in Sport, Exercise & Health Science, Extreme Environments Laboratory, Department of Sport & Exercise Science, University of Portsmouth, UK.Dr Heather Massey PhD, MSc, BSc (Hons), FHEA– Senior Lecturer in Sport, Exercise & Health Science, Extreme Environments Laboratory, Department of Sport & Exercise Science, University of Portsmouth, UK.

Educated at the University of Loughborough, Dr Massey joined the University of Portsmouth in 2007. Following 6 years based at the Institute of Naval Medicine (INM) from 2002 to 2007 and was Physiologist within the Environmental Medicine Division of the INM. She has spent over 15 years researching and advising the military, industry and elite sports people in the areas of thermoregulation, environmental and occupational physiology. She has published over 50 scientific papers and reports in these areas.
Dr Massey has been supporting the Ectodermal Dysplasia Society’s medical advisory board since 2014, undertaking temperature control assessments, and offering support and advice on potential cooling strategies for those affected by Ectodermal Dysplasia.

Maia Thornton – Appearance Phycologist

Maia

Maia Thornton is a Research Fellow at the Centre for Appearance Research, UWE Bristol. Her work is focussed on the experience and psychosocial impact of living with appearance-affecting conditions or injuries, otherwise known as visible differences. Maia has a particular interest in developing evidence-based interventions to support the psychosocial adjustment of these individuals and their families.

Maia enjoys working closely and collaborating with charities, health professionals, and other external organisations. She values the input of individuals with lived experiences and prioritises the inclusion of public involvement in her research design and implementation.

Marie-Louise Lovgren – Dermatologist