Burning Nights CRPS Support is a UK national charity dedicated to raising awareness of Complex Regional Pain Syndrome (CRPS)
2019-02-26
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8:00 am

Rare Disease Day 2019

28 February @ 8:00 am - 5:00 pm
Please show your support for Rare Disease Day 2019 and help us raise awareness of Complex Regional Pain Syndrome (CRPS)

Rare Disease Day 2019 is being held on Thursday 28 February 2019 around the world and we will be taking part! Rare Disease Day takes place on the last day of February every year. Complex Regional Pain Syndrome (CRPS) is classed as a rare disease which is why we recognise Rare Disease Day here in the UK. As a UK CRPS charity we will be raising awareness of both CRPS and Rare Disease Day 2019 on 28 February 2019. Rare Disease Day was introduced into the USA in 2008 by National Organisation for Rare Disorders (NORD). Every year the day grows and grows and it was 2015 that was seen as having the most impact and actually managed to trend on Facebook for the 1st time. For more information about Rare Disease Day 2019, please visit their website. The main objective for Rare Disease Day 2019 is to raise awareness about the rare disease community and for all the rare diseases including Complex Regional Pain Syndrome (CRPS) and especially raise awareness amongst the public about the rare diseases such as CRPS and how it has an impact on your lives as patients. Rare Disease Day 2019 is a fantastic chance to ask researchers, universities, students, companies, policy makers and clinicians to do more research into rare diseases such as CRPS and to make them aware of the importance of research for the rare disease community. According to the Rare Disease Day website, they say: The United Kingdom has engaged in Rare Disease Day since its beginning in 2008. Taking a political approach, many patient organisations have held receptions and debates focused on rare disease policy in local and national parliaments. Rare Disease Day website Every year there seem to be more events taking place all over the world on Rare Disease Day which is great as it does show there is support for Rare Disease Day. Are you taking part in an event on Rare Disease Day 2019 that you would like seen placed here? If so contact us!

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