Healthcare professionals – we need your input
Research into Norrie disease has been very limited due to its low incidence and prevalence worldwide – there are around 40 cases in the UK and an estimated 500 globally – which means that it is vital to pool resources. The NDF strongly supports collaborations globally to optimise resources such as expertise, patients, money, patients, facilities etc.
NDF is calling upon the Norrie community, researchers and funders to support our collaborative endeavours in starting new much needed research to treat and prevent progression of Norrie disease.
NDF has brought together world renowned experts in Norrie disease and researchers through the NDF Scientific and Medical Advisory Board, which is driving research in the EU/UK:
- There is currently a 3 year laboratory study at the premier research institute, UCL Great Ormond Street Institute of Child Health, London to better understand the Norrie hearing loss with the goal of treating with gene therapy;
- NDF is creating a Norrie disease Patient Registry with Great Ormond Street Hospital, London which will enable global participation. We will be updating on the progress of the patient registry on our research page.
NDF very much hopes that healthcare professionals everywhere will continue to contribute with their expertise and also encourage their patients to participate in the patient registry and research.
For more information please contact firstname.lastname@example.org.