Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose.
Rare Disease Day is observed every year on the 28th February (or 29 if it falls on a leap year)—the rarest day of the year!
Rare Disease Day was set up and is coordinated by EURORDIS and 65+ national alliance patient organisation partners. Rare Disease Day provides an energy and focal point that enables rare diseases advocacy work to progress on the local, national and international levels.
Rare communities take the opportunity to raise awareness of their own conditions as well as collectively recognising the struggles that people with rare conditions face.
Check out the Rare Disease Day film which we developed with the BDB network to raise awareness of some of the rarest conditions in the world, as well as talking about our culture and diverse communities.
Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers.
Every year, Breaking Down Barriers brings the Rare Disease community together to raise awareness and strive for better healthcare for all.
The team also attend events such as 24 hours of Rare and work in collaboration with umbrella organisations such as Rare Disease UK to take over their twitter accounts – so we can ensure our voice of the Rare Disease community is spread far and wide…
Find out more about Rare Disease Day and find out what is happening near you on the Rare Disease Day website.
At Breaking Down Barriers, we believe that patient organisations and support groups have an important role to play in addressing the challenge of developing appropriate genetic services for the UK’s multi-ethnic population.
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