Rare Disease Day 2023
Tuesday 28th February is Rare Disease Day 2023, an event celebrated in over 85 countries worldwide to raise awareness and generate change for people living with a rare condition, and their families and carers. A disease or condition is rare if it affects fewer than one in 2,000 people within the general population - and several eye conditions meet this definition.
In a recent report on BBC Wales, a patient in Caerphilly with Behçet's disease said that there is a lack of mental health support for people with rare conditions, for more info, click here.
To mark the event, Fight For Sight, the charity funding ground-breaking research into sight loss, has published 'Five ways we’re funding research into rare eye conditions'. You can read it here.
The Gene Vision website is a resource containing information about rare genetic conditions affecting the eye. Topics covered include information and support available for the newly diagnosed, current research, and specific information for a wide range of eye conditions (for both patients and professionals). It also has links to the various organisations and charities providing support to people affected by rare eye conditions including albinism, aniridia, Stargardt disease and Usher syndrome.
You can also follow #RareDiseaseDay on Twitter for more information.
Posted on the 27th of February 2023