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Rare Disease Day is an annual awareness event dedicated to increasing public understanding of rare diseases and the impact on patients’ lives. It was first celebrated in 2008 on 29th February, a ‘rare’ date that happens only once every four years. Having started as a European event, it has progressively become a world phenomenon, with the USA joining in 2009 and then involving over 100 countries all over the world in 2020.
Rocket Pharmaceuticals is a fully-integrated, clinical-stage company advancing numerous gene therapies with the aim of curing rare childhood diseases. This year, the company is working to light up as many buildings and landmarks as possible across the globe in Rare Disease Day colors on or around February 28 to share a strong message of solidarity. This concept originated in 2019 when the Empire State Building in New York City was striped in Rare Disease Day colors: pink, green, blue and purple.
As part of this campaign Rocket Pharmaceuticals – which is also a member of NORD’s (National Organization for Rare Disorders) Corporate Council in the US – has been working with other businesses and individuals to get as many landmarks involved. Hawys Evans, a Senior Headhunter in pharmaceuticals and biotechnology at global search and talent firm Invenia Group decided to get involved after hearing about the campaign and worked with CBRE to involve The Royal Liver Building in Liverpool, which will be illuminated blue for the event. Hawys commented: “This campaign is really important for raising awareness of rare diseases. I studied a Bachelor of Science degree at The University of Liverpool so I have always had a passion for the city, and I am thrilled the Royal Liver Building will be lighting up alongside many other famous landmarks.”
Other buildings and locations in the UK that will be illuminated to mark Rare Disease Day 2021 include Bradford City Hall in Bradford and Market Square in Sunderland.
“Developing potential cures for devastating rare diseases is a passion for our team and the core vision of Rocket. The ‘I am Rare Hear me Roar’ campaign reflects the singular courage that patients and families affected by rare disease display every single day of their lives – and together with over 300 million rare disease patients we are so proud to be fighting the battle against these illnesses. As a testament to our joint vision, what began as a local request to the Empire State Building to light up for Rare Disease Day has evolved globally to touch the lives of millions around the world. We are proud to stand alongside Invenia Group in recognizing Rare Disease Day 2021 and look forward to expanded efforts in 2022.”
1 in 20 people will live with a rare disease at some point in their life but despite this, there is no cure for the majority of rare diseases, and many go undiagnosed.
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