How you can make a difference for people living with rare diseases

Today, 400 million people around the world are affected by a rare disease[1], yet there are no approved treatment options for over 90% of the more than 7,000 known rare diseases[2],[3].

The journey to diagnosis requires incredible strength and patience from people living with rare diseases and their families during an already challenging time.[4] The numerous examinations by medical specialists, clinics, institutes, and authorities often requires stamina and the long period of uncertainty can be burdensome for those affected.

At Alexion, AstraZeneca Rare Disease, we’re on a mission to transform the lives of people affected by rare diseases, ensuring that every patient is supported on their journey and has access to the quality care they need. To achieve this, we need faster and more accurate diagnosis – and this starts with the critical step of raising awareness of rare diseases.

?On this year’s Rare Disease Day, we’re supporting rare disease patient organizations across Europe by elevating patient voices. “ColourUp4RARE” is a multi-company campaign endorsed by patient organizations, calling for more research, new diagnostic and treatment options, the necessary policy framework conditions, and for sustainable therapeutic care to ensure people living with a rare disease have a better quality of life.

The “ColourUp4RARE” campaign is based around the phrase "When you hear hoofbeats, you think of horses, not zebras" which was coined in the 1940s to emphasize that rare possibilities are likely to be overlooked. Following this, the zebra has become a symbol for rare diseases as a reminder that rare diseases are more prevalent than commonly believed and deserve greater recognition and research. So, what can you do to make a difference?

“Colour up for Rare!” – We invite everyone to show their support and raise awareness for those living with rare diseases by ‘colouring up’ the stripes of a zebra in the colours of Rare Disease Day while learning more about rare diseases: www.colourUp4RARE.com

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#RareDiseaseDay #ShareYourColours #colourUp4RARE

[1] Wakap et al. Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database. European Journal of Human Genetics (2020) 28:165–173. https://doi.org/10.1038/s41431-019-0508-0

[2] Kaufmann et al. From scientific discovery to treatments for rare diseases – the view from the National Center for Advancing Translational Sciences – Office of Rare Diseases Research. Orphanet Journal of Rare Diseases (2018) 13:196. https://doi.org/10.1186/s13023-018-0936-x

[3] Haendel et al. How many rare diseases are there? Nat Rev Drug Discov (2020) Feb; 19(2): 77–78.

https://doi.org/10.1038/d41573-019-00180-y

[4] eurordis.org. (n.d.). What is a rare disease? [Online] Available at: https://www.eurordis.org/information-support/what-is-a-rare-disease/.