In Switzerland, 500,000 people suffer from rare diseases1. Over 90% of the more than 7000 known rare diseases have no approved treatment options.2,3 For this reason, on Rare Disease Day — 29 February 2024—, «colourUp4RARE» aims to raise awareness for people with rare diseases and their families. The campaign invites you to celebrate colour and take part in the online challenge to paint zebras, the international symbol for rare diseases.
In the run up to International Rare Disease Day on 29 February 2024, an interactive online challenge called «colourUp4RARE» is taking place. The aim of the awareness campaign is to increase the visibility of those affected by rare diseases and the challenges they face, and to convey the need for research and for the development of new diagnostic and treatment options. The quality of life of people with rare diseases needs to be improved.
400 million people worldwide are affected by rare diseases
Although rare diseases may only affect a few individuals, together, they add up: 3.5 to 5.9 percent of the world population—that is, about 400 million people—suffer from a rare disease4, and half of those are children5,6.
Patients wait an average of 4.8 years for the correct diagnosis and often have countless medical visits, unsuccessful or incorrect treatment approaches and have to travel long distances to get the correct diagnosis5.
The interactive online «colourUp4RARE» challenge
The zebra has become the international symbol of rare diseases. A widely cited phrase in medical teaching says: «When you hear hoofbeats, think of horses, not zebras». This phrase highlights the fact that common diseases are more likely than rare ones, even if the patient's symptoms fit both.
From Monday 26 February to Sunday 3 March 2024, all colours are celebrated for those with rare diseases.
- With the interactive online challenge on www.colourUp4RARE.com, you can select one of the five colours of "Rare Disease Day" and use it to colour in a zebra online.
- You also have the chance to find out more about rare diseases.
- Each participation in the online challenge benefits a good cause: It contributes to a donation to the Swiss national umbrella organisation «ProRaris — Swiss Alliance for Rare Diseases»», among others.
The sponsors of the campaign
colourUp4RARE is sponsored by the research-based pharmaceutical companies Alexion, Chiesi, Janssen, Novartis, Takeda and UCB and the games manufacturer Ravensburger. The campaign is part of the joint commitment to the field of rare diseases, as called for by self-help groups, the medical community, politics and the EU Commission. It also advocates for a better framework for research and the development of new diagnostic and treatment options, as well as for optimised care. We need to work together to improve the quality of life for people with a rare disease.
colourUp4RARE was initiated by Alexion in 2023. In 2024, the campaign will run once again within Germany, Austria and Switzerland, as well as in other European countries (Belgium, Denmark, France, Finland, Iceland, Italy, the Netherlands) and in Canada.
Find out more about the international campaign at www.colourUp4RARE.com.
Media contact
Tel. +41 (0) 41 725 75 75; media.switzerland@astrazeneca.com
Barbara Hess, Corporate Communications Lead, AstraZeneca Switzerland
AstraZeneca in Switzerland
AstraZeneca is a British pharmaceutical company that has been operating in Switzerland for almost 50 years. The company is one of the highest revenue pharmaceutical companies in Switzerland and operates in the following therapeutic areas: oncology, respiratory diseases and immunology, cardiovascular, renal and metabolic disorders plus vaccines and immunotherapies, which also includes medicines for the control of COVID-19. The primary aim of the over 285 employees is to make new medicines available to affected patients as quickly as possible. In Switzerland, more than 230,000 people are treated with a drug from AstraZeneca. The company expects over 35 new therapies to be authorised by 2026. AstraZeneca has set itself the target of making the Swiss healthcare system more sustainable and more resilient. To make its contribution to a healthy planet and healthy people, the company is working tirelessly to reduce its CO2 emissions and waste. It has therefore set itself the target of becoming CO2-negative by 2030.
Further information about AstraZeneca Switzerland: www.astrazeneca.ch
Alexion in Switzerland
Alexion, AstraZeneca Rare Disease, is the group within AstraZeneca focused on rare diseases, created following the 2021 acquisition of Alexion Pharmaceuticals, Inc. As a leader in rare diseases for more than 30 years, Alexion is focused on serving patients and families affected by rare diseases and devastating conditions through the discovery, development, and commercialisation of life-changing medicines. Alexion focuses its research efforts on novel molecules and targets in the complement cascade and its development efforts on haematology, nephrology, neurology, metabolic disorders, cardiology, and ophthalmology. Headquartered in Boston, Massachusetts, Alexion has offices around the globe and serves patients in more than 50 countries. The Swiss branch is based in Baar.
For more information, please visit: alexion.com/worldwide/Switzerland
References
1 National Rare Disease Policy, 2014. Swiss Federal Office of Public Health FOPH.
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 Nguengang WaKap, S., Lambert, D.M., Olry, A., Rodwell, C., Gueydan, C., Lanneau, V., Murphy, D., Le Cam, Y. and Rath, A. (2019). Estimating cumulative point prevalence of rare diseases: Analysis of the Orphanet database. European Journal of Human Genetics, [online] 28. DOI: 10.1038/s41431-019-0508-0.
5 National Rare Disease Policy, 2014. Swiss Federal Office of Public Health (FOPH): https://www.bag.admin.ch/bag/de/home/krankheiten/krankheiten-im-ueberblick/viele-seltene-krankheiten/seltene-krankheiten-ch-und-nationales-konzept.html Viewed on 13/02/2024
6 Global Genes. (n.d.). RARE Disease Facts. [Online] Available at: https://globalgenes.org/rare-disease-facts/. Viewed on 13/02/2024