GOSH participates in the 10th China Rare Disease Summit in 2021

Great Ormond Street Hospital (GOSH) was invited by Chinese Organization for Rare Disorders (CORD), to virtually participate in the 10th China Rare Disease Summit, the largest forum on rare diseases in China, which was held on the 10-12th September 2021 in Hangzhou, China.

China Rare Disease Summit was an opportunity for Chinese and international delegations focusing on rare diseases to come together to discuss the recent policies, advances and emerging trends in the diagnosis and management of rare and ultra-rare diseases, and raise public awareness of rare disease groups. Over 1,000 delegates and guest speakers from governmental bodies, hospitals, patient groups, rare disease organisations, medical companies joined the summit on site. It received extensive coverage from Chinese national media and social media.

Three world-leading experts from GOSH presented at the summit remotely at a GOSH panel session and attended a live Q&A session, to share GOSH’s expertise and achievements in paediatric rare diseases, especially in cardiology, endocrinology and dermatology.

Prof Andrew Taylor, Director of Innovation and Professor of Cardiovascular Imaging, presented on ‘Rare diseases and GOSH’
Prof Mehul Dattani, Professor of Paediatric Endocrinology, presented on ‘Cushing syndrome in childhood and Adolescence’
Prof Veronica Kinsler, Professor of Paediatric Dermatology and Dermatogenetics, presented on ‘Paediatric Dermatology at GOSH - what makes us unique’

In addition, Ms Jing LI, Trade and Investment Manager, Clinical service and Healthy Aging on behalf of The British Council Shanghai office and Department for International Trade (DIT) gave an opening speech for the GOSH panel on the day. She highlighted GOSH’s leading position in the UK’s paediatric healthcare and DIT’s commitment to facilitate strategic collaboration between the UK and China in the rare disease areas.

After the GOSH panel session, Mr Rufang Huang, the founder of Chinese Organisation for Rare Disorders, shared: “We are very grateful to Great Ormond Street Children's Hospital in the UK for participating in our 10th China Rare Disease Summit and comprehensively demonstrating to us the world-class children’s hospital’s valuable experience and cutting-edge technology of clinical and research work in rare diseases. GOSH's successful experience and medical concept in rare diseases are very worth learning and applying for reference, which is very enlightening and inspiring. We hope to further cooperate and communicate with GOSH in the future, so that we could work together to give more children with rare diseases life-saving support.”

As the global pioneer in the field of clinical work, research, innovation, education in paediatric rare diseases, our consultants have accumulated extensive experience and knowledge of rare diseases in children and developed a mature multi-disciplinary diagnosis and treatment model. GOSH has treated more than 28,000 children with rare and ultra-rare diseases. GOSH is researching more than 200 rare and complex diseases and has more than 500 research projects looking into them (based on GOSH internal data, renewed May 2021).

Mentioning the summit, Prof Andrew Taylor shared: “It was an honour for GOSH to be part of the China Rare Disease Summit to discuss and show internationally the importance of rare diseases for the patients and families they affect, and also to show how advances in paediatric rare and complex disease understanding and treatments can lead to advances in the management of more common diseases across all age ranges”.

“Importantly, we will only make further discoveries and improve the lives of rare disease patients and their families if we collaborate on a global scale. In doing so, we must engage with patients and the public and ensure that we create trusted data environments so that we can pool our understanding of rare diseases and their outcomes to effectively improve patient care and aide the staff caring for these patients.”

Massive thanks go to Prof Andrew Taylor, Prof Veronica Kinsler, Prof Mehul Dattani, Ms Jing LI, and everyone from Chinese Organisation for Rare Disorders who helped to facilitate this wonderful summit.

Prof Andrew Taylor

GOSH Director of Innovation and Professor of Cardiovascular Imaging

Professor Andrew Taylor is an expert in cardiovascular imaging and has established the Centre for Cardiovascular MR at Great Ormond Street Hospital (GOSH). He has worked at GOSH since 2003. Over the last 8 years, he has been the lead for the Cardiac and Cancer Units at GOSH, and was the operational lead for the Hospital’s response to the first phase of the COVID-19 pandemic in March 2020. In January 2021, he was appointed as the new Director of Innovation at GOSH to drive digital & tech development and drug discovery for the Hospital. Professor Taylor is also Professor of Cardiovascular Imaging at University College London and Head of the Children’s Cardiovascular Disease Department at UCL Institute of Cardiovascular Science. More recently, he has been involved with the development of 3D printing, with a particular interest in the artistic representation of the heart. This has resulted in recent funding from the Wellcome Trust or a venture called ‘The Heart of the Matter’, which brings together patients, families, artists, engineers and clinicians.

Prof Mehul Dattani

Professor of Paediatric Endocrinology, Head of Paediatric Endocrinology

Professor Mehul Dattani is Professor of Paediatric Endocrinology based at the University College London (UCL) Great Ormond Street Institute of Child Health (ICH), and Head of Clinical Service in Endocrinology at Great Ormond Street Hospital (GOSH). He has an active clinical practice in paediatric and adolescent Endocrinology at GOSH and University College London Hospitals (UCLH). He is Head of the Genetics and Epigenetics in Health and Disease (GEHD) Section within the Genetics and Genomic Medicine Programme at ICH. He recently completed a three-year term as Chair of the British Society for Paediatric Endocrinology and Diabetes, and is current Chair of the Programme Organizing Committee and member of the Council of the European Society for Paediatric Endocrinology (ESPE). He has recently been elected President of the European Society for Paediatric Endocrinology in 2020.

Prof Veronica Kinsler

Professor of Paediatric Dermatology and Dermatogenetics

Professor Veronica Kinsler is the Professor of Paediatric Dermatology and Dermatogenetics at Great Ormond Street Hospital for Children and UCL GOS Institute of Child Health. Veronica is a clinician-scientist, working in the field of serious and untreatable children’s skin diseases, many of which involve other organ systems, and carry a predisposition to cancer. Her research aims to find the causes of these diseases and to develop novel targeted therapies, whilst expanding knowledge of the biology of somatic mutagenesis and human embryogenesis. Her lab team is based in the world-famous Francis Crick Institute since 2019 where she is Senior Group Leader of the Mosaicism and Precision Medicine Laboratory. In addition, Prof Kinsler established and directs the GOSH Rare Dermatology Diseases Resource, an Human Tissue Authority (HTA) tissue bank project involving over 1000 families, which has led to her lab’s discovery of the genetic causes of many untreatable diseases.

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