World Rare Disease Day, which aims to raise awareness amongst the general public and decision-makers about rare diseases and their impact on peoples' lives.
This year the NIHR are collecting messages of support for people with rare diseases and for rare diseases research. This is part of a national initiative that will see these messages from patients and the public taken to Parliament to highlight the need to continue to fund and support transformative research into rare disease diseases diagnosis and treatment.
In the common room we have placed a collection box and some comment cards and literature on rare disease. Please spare a minute or two on Monday to add your comment to this important campaign.
To find out more visit our Rare Disease Day website
NIHR Biomedical Research Centre at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology
Stats:
- There are between 5,000 and 8,000 rare diseases, and together in the UK they affect the lives of 3 million people, half of which will be children
- Rare diseases are commonly misdiagnosed which delays treatment and often there are no existing effective cures for these conditions
- Inherited diseases affecting the retina are a leading cause of blindness among children; are the leading cause of registered blindness in working-age adults in England and Wales and the third leading cause of registered blindness overall
- In 2013/2014 over 1,600 new Certifications of Visual Impairment (CVIs) in England and Wales were due to inherited retinal diseases