In observance of this year’s Rare Disease Day on 29 February, Alexion has launched an international campaign aimed at raising awareness of how to improve the quality of life for rare disease patients.
There are more than 7,000 known rare diseases that impact over 400 million people globally. However, most rare diseases are poorly researched and therapy is available for less than 10% of them.
It is hoped that the ‘colourUp4RARE challenge’, jointly organised by pharmaceutical research and healthcare companies and Ravensburger, will spotlight the need for improved policy framework conditions for research and development, new diagnostic and treatment options, and optimised care for patients.
Those wanting to get involved are encouraged to digitally paint a zebra, an internationally recognised symbol for rare diseases, and “share their colours for those affected”.
Campaign participants can also download a filter to their mobile phones and share the photos they take to their social media accounts using the hashtags #colourUp4RARE #RareDiseaseDay #ShareYourColours.
Recognised on the last day of February every year, Rare Disease Day is a global initiative to bring attention to rare diseases and improve equity in social opportunity, healthcare and access to diagnosis and therapies for rare disease patients.
Since being established in 2008 by the European Organisation for Rare Diseases, the day has played a critical role in building an international rare disease community and seen a significant increase in events and campaigns across the world, with patient organisations, medical professionals and research institutions uniting to drive progress in rare disease research and advocacy.
Last year’s efforts saw Sanofi launch its ‘This is Rare’ campaign, which brought the rare disease community together at Abbey Road Studios in London to record a cover of a song from The Greatest Showman, ‘This is Me’.
Havas Health & You also partnered with H4B Boston and Beyond the Diagnosis to present #RareInTimesSquare, a campaign aimed at putting a face to some of the rarest diseases in the world by enlisting dozens of artists to create portraits of children living with a rare disease.