Rare Disease Day 2017

Losing your sight can affect your life in a variety of ways, from day-to-day undertakings, to the responsibilities of a job or pursuing your hobbies and interests. Moorfields seeks to provide care, help and support for people living with sight loss, and also to understand diseases better to ensure new treatments and cures can be found.

Today is Rare Disease Day and this year’s theme is research. World Rare Disease Day raises awareness for rare diseases and improves access to treatments and medical representation for individuals with rare diseases and their families. #RareDiseaseDay 2017 is an opportunity to call on all researchers, universities, students, companies, policymakers and clinicians to do more research and to make them aware of the importance of research for the rare disease community.

Rare eye diseases such as birdshot uveitis, acanthamoeba keratitis, leber hereditary optic neuropathy, blepharospasm and Stargardt disease affect fewer than five per 10,000 people, but the impact is significant. Our Biomedical Research Centre (BRC) works closely with our patients to identify the challenges they face, their concerns and their needs, and to facilitate relationships with multiple stakeholders to influence sight loss and vision research. The BRC is funded by the National Institute of Health Research, whose Rare Diseases Translational Research Collaboration focuses on the causes, impact and treatment of rare diseases. 

The team at rarediseaseday.org have created a video highlighting how isolating it can be to have a rare disease and highlighting the hope and promise that comes with additional research. Watch the video below:

You can participate in raising awareness and be part of the change on social media. Follow @Moorfields, @MoorfieldsBRC and @RareDiseasesTRC for more.

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