Meet our EB Priority Setting Partnership Steering Group

 
DEBRA UK and the James Lind Alliance work with the members of the Steering Group at all stages of the project as they make key decisions about our approach. For example:  
•    publicising the work to potential partners
•    developing and publicising survey forms, and other methods where necessary
•    search for existing research evidence
•    reviewing all the evidence to agreeing the list of priorities to be discussed at the priority setting workshop
•    recruit to the priority setting workshop and determine the final priorities
•    advising on the best language, methods and inclusive engagement strategies to reach a diverse range of patients, carers and clinicians.

 

The Steering Group

 

Lived experience representatives

 

Ajoy Bardhan

Ajoy Bardhan is a clinical lecturer at the University of Birmingham, and an honorary consultant dermatologist at University Hospitals Birmingham NHS Trust, where he works in the highly specialised adult epidermolysis bullosa (EB) unit. He is involved in several projects exploring basic biology and clinical aspects of EB. 

  

 

Anna Martinez

Dr. Anna Martinez is one of UK's leading Paediatric Dermatologist and Honorary Associate Professor at Great Ormond Street Hospital. Anna has led the Highly Specialised National Paediatric Epidermolysis Bullosa Service since her appointment in 2003. She is also Dermatology Clinical Lead at the Portland Hospital. Anna passion lies in the management of skin fragility diseases, ichthyoses and Netherton syndrome.

Anna has many nominations and awards; she was nominated Colleague of the year at GOSH in 2018 and was in the top three the NHS Health Heroes in 2018. She publishes extensively and is Chief Investigator and Principle Investigator for numerous clinical trials into novel therapies for children with skin diseases. Anna is currently Chief Investigator for the MISSIONEB in the UK (mesenchymal intravenous stromal cell infusions in children with Recessive Dystrophic Epidermolysis Bullosa) a randomized double blinded placebo-controlled cell therapy study. The results of this study will be available soon.

 

Ella Turner

Ella Turner is a Member of Debra UK and has EB simplex. She is a regular volunteer for Debra activities, sharing her knowledge, and EB lived experience, to help various projects she is involved with. She has become a part of the JLA PSP due to her lived experience of living with EB and having been previously involved in strategy setting projects in the Civil Service, where she worked for over 15 years.

 

Finola Sheehan

Finola has been working with children, young people and their families, with EB, for nearly 11 years. Throughout my time working within the EB team at Gt Ormond St Hospital, our families are often interested to know what research projects are currently being undertaken and any new treatments that may arise from these. I am excited to be involved in collaborating with patients, carers and other clinicians in being able to identify key research questions that are a priority for our patient group.

   

Hazel Nugent (DEBRA Ireland representative)

My name is Hazel Nugent. I have EB simplex, my father, three sisters and nephew also have simplex. EB simplex affects many of my extented family. I am on the expert panel for Debra Ireland and this has lead me on to joining the James Lind Alliance.

 

 

 

Irene Lara-Coralles

Dr. Irene Lara-Corrales is an Associate Professor of Pediatrics at the University of Toronto and a staff physician in Pediatric Dermatology at the Hospital for Sick Children in Toronto, Canada. She completed her medical training and pediatric residency at the University of Costa Rica, in San Jose, Costa Rica and her pediatric dermatology training at the Hospital for Sick Children. She obtained a Master in Science degree from the University of Toronto.She is involved in numerous clinical and research endeavours, as well as teaching commitments. She co-directs the Genodermatoses, Epidermolysis Bullosa, Vascular tumors, Hidradenitis suppurativa and Cafe-au-Lait screening clinics at SickKids. Her research interests include genodermatoses, inflammatory diseases and vascular anomalies.

 

Isha Arilal

My name is Isha Arilal (26y), I was born in Mozambique, Maxixe and moved to the UK at 4 years old. I was born with Recessive Epidermolysis Bullosa Simplex, a new mutation as I was the only one in my family with the condition – there has been no history in my family with the disease.

 

 

 

Jatinder Harchowal

Jatinder has 20 years’ experience as a Chief Pharmacist and is currently in University College London Hospitals NHS Foundation Trust (UCLH). Prior to working in UCLH, Jatinder worked as Chief Pharmacist in Ealing Hospital, Brighton & Sussex University Hospitals, and The Royal Marsden. 

 

     

Katie White

I am the parent of a 7-year-old boy who has EBS generalised severe and so can recognise the vast and traumatic effect EB has on every aspect of life. I have lived with so much trauma as a result of EB and the devastating effects it has had on our family. I have learnt so much about the way in which the inflammatory process has presented itself in EBS-GS and feel there is so much data to collect. I am also a registered nurse of 20 years and Tissue Viability nurse background.

 

Maryam Ahmadi

My name is Maryam, I am 22 years old and I live with Junctional Epidermolysis Bullosa. I am originally from Afghanistan and grew up Norway and I moved to the UK five years ago. I am excited to be a part of this PSP and do my part in helping understand the research priorities for EB.

  

 

 

 

Paul Cotton

Paul has Localised EB Simplex and has been involved with DEBRA for approximately 40 years, as a member, previously on the Board of Trustees and currently a member of the Charitable purposes committee. He was previously a Podiatrist in the Health Service for 38 years, now semi-retired, working 2 days per week privately.

 

 

 

 

Rebecca Knight

My Name Is Rebecca and my husband and 2 young children all have EB. I am Currently full time carer for both of my children and dedicate all of my time to them and helping and supporting as much as I can. Recently I've been involved in DEBRA to give my lived in experienced of EB and living in a rural Community. I am keen to be involved in as much EB related topics/ activities as I can, as I hope my experiences and what we have overcome can help and support others.

  

Ryan Hultman

Ryan is the father of a daughter with Recessive Dystrophic Epidermolysis Bullosa and dedicated most of those years since her birth volunteering as Vice President of Debra Canada and now also as a Board Member of Debra International.

He has worked tightly within Debra Canada’s board of directors to steadily increase the scope and community profile of DC within Canada and enjoyed working with international partners for the betterment of lives suffering with EB worldwide. He has a career in residential architecture and fills much of his remaining spare time as a painter and sculptor.

 

Sarah Dixon

Sarah Dixon is a parent of two children with epidermolysis bullosa, with a science and healthcare background.

 

 

 

 

Stefan Edwards - coming soon 

 

 

EB PSP Project Team

  
James Lind Alliance Chair – Caroline Magee

Caroline is a freelance consultant who supports organisations with strategic change initiatives and people engagement activities. She joined JLA as an Adviser in 2023.

Caroline started her career as a biomedical researcher before focusing on communications and engagement strategies for global pharmaceutical and biotechnology clients. She then applied this experience to the health and care research sector working as Communications Lead for National Cancer Research Institute (NCRI), before taking up a role as Deputy CEO for the National Institute for Health and Care Research (NIHR) Academy. While at NIHR, Caroline co-led the establishment of the Academy and enhanced the support provided to the Academy's career development award holders through enhancing their annual conference, embedding Patient and Public Involvement and establishing the Academy Mentorship programme. Caroline also led on the publication of the NIHR’s first Diversity Data Report.

 

EB PSP Lead – Claire Mather Director of Member Services, DEBRA UK

Claire brings over 20 years of experience of working both for the NHS as a qualified nurse and Ward Sister and for the third sector as Director of Nursing in a leading hospice. Following a Master’s in Business Administration, she took on the role of a director at DEBRA and is passionate about helping to make a difference, today, for people living with EB.

A significant focus of the role has been to work collaboratively with key stakeholders to provide creative solutions to the challenges faced in the delivery of best practices, including working in partnership with the NHS, developing and pump priming new initiatives, and establishing a national community support service. Claire has undertaken the role of Interim CEO and has also led on a number of commercial projects partnering with organisations in the private and public sector to both improve the range of goods and services on offer to those living with EB and raise income for the charity.

 

 EB PSP Coordinator – Sophie Jones 

Sophie works with members at DEBRA UK to ensure that their lived experience of EB influences and shapes our work across the charity.  Before joining DEBRA Sophie worked at Cancer Research UK for nearly 10 years, mainly in the Policy & Public Affairs Directorate, getting the public and patients involved in their political lobbying campaigns.

  

 

EB PSP Information Specialists – Charlotte Heron Sugden and Amy Page

Charlotte Heron

Charlotte is one of the Directors of Synergy Healthcare Research. She led the Synergy team that helped DEBRA UK conduct the EB Insights Study in 2023. Charlotte has an MA in Natural Sciences from Cambridge University. She has over 16 years’ experience working in healthcare market research, and has worked with numerous charities and patient advocacy groups to help them conduct research into a wide variety of different health conditions. 

 

Amy Page

Amy is a Senior Account Director at Synergy Healthcare Research. In 2023 she was part of the Synergy team who supported DEBRA in creating the EB Insight Study. Synergy support this PSP through data gathering, data management and analysis.  
 
Amy has extensive experience facilitating research with patients and the people that support them. She has an MPhil in Health Sciences, a MSc in Web Science, and a First Class Sociology degree. 

 

Dr Sagair Hussain

Sagair brings over 20 years of experience both as a Medical Researcher from world-leading research institutions and as Director of Research in leading dermatology charity British Association of Dermatologists, 
managing multi-million-pound research programmes involving academic institutions, pharmaceutical companies and NHS Trusts.

Whilst working at the British Association of Dermatologists (BAD), he delivered their most successful research initiative; psoriasis patient registry (BADBIR). It is now the world’s largest psoriasis specific patient register involving approximately 20,000 patients, 10 pharmaceutical companies and 165 dermatology centres throughout the UK and Republic of Ireland.

Through BADBIR, he raised the profile of psoriasis amongst scientists and clinical researchers. He has a PhD from University College London and a Master’s in Business Administration from Imperial College.

He lives in Carshalton with his partner, Sara and their 2 young girls. He spends the weekends being a chauffeur for the girls and, when he can, enjoys going to the gym and playing 
cricket.