Atypical Haemolytic Uraemic Syndrome – RDG
- Aims of the Group
- To establish and maintain a registry of all individuals affected by aHUS in the UK
- To provide information to clinicians on the investigation and management of aHUS
- To provide information to affected individuals and their families on aHUS
- To facilitate collaborative research into all aspects of aHUS
- Current Activities
Details of the current activities of the group can be found in the minutes of the RDG meetings and in the annual reports below.
- International Links
- Patient Support Groups
aHUSUK is a UK support group, established in 2011 which helps support those affected by aHUS, as well as their families and caregivers. They also aim to advance the understanding and awareness of the public and the medical profession on the causes and treatment of aHUS and support the campaign for the drug Eculizumab to be made available for all patients in the UK who need it.
aHUS Patient and Family Conference
The 2nd atypical Haemolytic Syndrome (aHUS) Patient and Family Conference was held in London on Saturday, June 27th 2015. For further details about the event please click here.
- Group Members
- Paul Barlow, Professor of Structural Biology, University of Edinburgh
- Terry Cook, Professor of Renal Pathology, Imperial College
- Tim Goodship, Professor of Renal Medicine, Newcastle University
- Claire Harris, Professor, Cardiff University School of Medicine & Head of Complement at GSK, Stevenage, UK
- Sally Johnson, Consultant Paediatric Nephrologist, Newcastle Hospitals NHS Foundation Trust
- David Kavanagh, Senior Lecturer in Nephrology, Newcastle University RDG Lead
- Kevin Marchbank, Lecturer in Applied Immunobiology, Newcastle University
- Paul Morgan, Dean of Medicine, Cardiff University School of Medicine
- Steve Perkins, Professor, Department of Structural and Molecular Biology, University College London
- Matthew Pickering, Professor of Rheumatology, Imperial College
- Len Woodward, aHUSUK Representative
- Anna Richards, Wellcome Intermediate Clinical Training Fellow, University of Edinburgh
- Marie Scully, Consultant Haematologist, University College London Hospitals
- Neil Sheerin, Professor of Nephrology, Newcastle University
- Paul Warwicker, Consultant Nephrologist, East and North Hertfordshire NHS Trust
- Aoife Waters, Consultant Paediatric Nephrologist, Great Ormond Street Hospital
- Disclosure of Conflicts of Interest
Tim Goodship – Fees received by Newcastle University from Alexion Pharmaceuticals (aHUS Advisory Board, UK CI for eculizumab studies, UK CI for aHUS Registry, lectures and seminars). Chair of the Board of Trustees, Kidney Research UK.
Claire Harris – Contract of employment as Head of Complement at GSK, Stevenage, UK.
Matthew Pickering – Fees received from Alexion Pharmaceuticals for invited lectures and funding for pre-clinical studies on experimental complement reagents.
Written by the aHUS Rare Disease Group