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31.01.2018

First National EB Meetings in India

DEBRA Chile heads to India – 11 January, Delhi

Dr Francis Palisson (DEBRA Chile Medical Director), Rosario Dell'Oro (Head of the DEBRA Chile nursing team) and Ignacia Fuentes (Head of the DEBRA Chile Research Team) visited the premier government hospital in Delhi, the All India Institute of Medical Sciences where Dr Palisson gave a talk to both doctors and residents of the Dermatology department. This was followed by a meeting with the vice-ambassador of Chile to India who arrived to show his support for the work of the Chilean team. Dr Palisson then saw about 6/7 patients and offered his advice and guidance to them.

First National EB Meeting – 13-14 January, Centre for Human Genetics, Bangalore

The two-day comprehensive, interactive meeting focused on the practical management of EB aimed at practitioners in the field from all specialties. It included sharing sessions by dermatologists and researchers from throughout India. Professor Celia Moss brought a team of 11 clinicians with specialties in various areas such as hand surgery, podiatry, and nursing. The audience included doctors from various parts of India. The Birmingham team used videos of operations and other procedures to supplement the lectures, and participants learnt from each other about delivery of services.

First DEBRA India Meeting for Patients – 15 January, Manipal Hospital, Bangalore

An EB Forum for patients was held launching the fledgling group DEBRA India. This event exceeded all expectations with patients attending from primarily Karnataka but also various parts of India. This was a truly remarkable event: the first opportunity families in India ever had to meet fellow sufferers and to be able to ask questions of the experts. All were deeply moved by stories of parents, many of whom had travelled long distances, some having lost children with EB, all struggling to find help for their children. An unanticipated challenge came from the multilingualism of the patients who spoke various languages that required simultaneous translations in order for all to understand.