Rare Disease Group

1. To identify key issues and challenges facing the field of Haemolytic Uraemic Syndrome, specifically in the development of an informatics framework within the UK

2. To stimulate and encourage industry partnerships.

3. To identify the needs and priorities for basic, clinical, translational and social research

4. To identify suitable funding opportunities and help support appropriate strategies for successful applications.

1. Conducting a nation-wide prospective data collection to compile a comprehensive HUS portfolio to faciltate longitudinal studies of disease outcome

2. Developing an international HUS biorespository

3. Developing colloborations with Public Health England and the British Paediatric Surveillance Unit.

North America:

  • Professor Mohammed Karmali, Director-General for the Laboratory of Food-borne Zoonoses, of the Canadian Public Health Agency will be developing an international consortium to lead efforts in understanding the mechanisms underlying the development of HUS in STEC infection.
  • Christoph Licht, Hospital for Sick Children Toronto, is involved in the Canadian HUS registry.

Europe:

  • Reinhard Wurzner, German-Austrian HUS Network. This network has ten years of experience in collating data on HUS within Germany and Austria. Dr Wurzner has published extensively on HUS and on the interaction between complement and Shiga toxin.
  • Chantal Loirat, Hôpital Robert Debré, Paris, France
  • Gema Ariceta, Hospital Materno Infantil, Barcelona, Spain
  • Diana Karpman, Lund University, Sweden
  • Ekaterini Siomou, University Hospital Of Ioannina, Greece
  • Nicole van de Kar, University Medical Center St Radboud, Nijmegen, Netherlands
  • Johan Van de Walle, University Hospital Gent, Belgium

Haemolytic Uraemic Syndrome Help (HUSH) is a UK support group which aims to offer support to sufferers and their families, and to raise awareness nationally of this condition.

Stec-HUS RDG Annual Report 2019 – 2020

RDG Lead(s)
  • Sally Johnson, Consultant Paediatric Nephrologist, Great North Children’s Hospital, Newcastle Upon Tyne, RDG Lead
Patient representative(s)
Other members
  • Bob Adak, Head of Gastrointestinal Infection Surveillance, Health Protection Services Colindale
  • Lisa Byrne, Public Health England
  • Rodney Gilbert, Consultant Paediatric Nephrologist, University Hospital Southampton
  • Tim Goodship, Professor of Renal Medicine, University of Newcastle upon Tyne
  • Lindsay Keir, Clinical Research Fellow in Paediatric Nephrology, Southmead Hospital, Bristol
  • Naomi Launders, Public Health England
  • Richard Lynn, Scientific Coordinator, British Paediatric Surveillance Unit
  • Moin Saleem, Professor of Padiatric Renal Medicine, Bristol Royal Hospital for Children
  • Neil Turner, Professor of Nephrology, Edinburgh
  • Nicholas Webb, Consultant Paediatric Nephrologist, Royal Manchester Children’s Hospital

The STEC HUS RDG would like to acknowledge the Heather Preen Trust for its generous donation.