colourUp4RARE

For better framework conditions for more research and development of new diagnosis and treatment options and for a secured access to healthcare

Rare diseases are not as rare as many people think: 400 million people around the world live with one of the approximately 7,000 rare diseases. On average, they wait 4.8 years for the correct diagnosis, and then learn that there is no approved treatment for more than 90 percent of known rare diseases.

On February 29, the Rare Disease Day (RDD), we want to raise awareness and visibility for all people with rare diseases and their families with "colourUp4RARE". We invite everyone to colour in our digital zebra herd – a symbol for rare diseases – and to share their colours for those affected.

Rare Disease Day

Rare Disease Day

The Rare Disease Day (RDD) is an international day of action to raise awareness for people with rare diseases. It was initiated in 2008 by EURORDIS – Rare Disease Europe the European alliance of national patient organizations.

The Rare Disease Day always takes place on the last day of February, which is the "rarest" day of the year every four years.

Why a zebra?

"Think of the unusual, of zebras", symbol of the rare diseases

"When you hear hoof tremors, think of horses, not zebras," is a widely cited medical teaching that was coined in the 1940s by Dr Theodore E. Woodward, Maryland University in Baltimore, USA. The aim is to make it clear that common diseases are more likely than rare ones, even if the symptoms of a patient fit both.

Over 70 years later, the zebra has become an international symbol for rare diseases, and because rare diseases are not that rare - after all, around 400 million people around the world are affected – on Rare Disease Day we are turning the theorem around and putting the spotlight on them with "colourUp4RARE" and our zebra colour-up challenge.

Materials

Downloads

Poster

Download, print and pin

Download now

Postcard

Download, colour in, and send to a friend.

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Infograph

Download and share.

Download now

colourUp4RARE filter

We have developed a filter that can be downloaded to your mobile phone. Take a photo, add the hashtags #colourUp4RARE #RareDiseaseDay #ShareYourColours and post it.

Facebook filter Instagram filter

Live Event

Colour in!

  1. Austria – Vienna – 29.02.24, from 06:00 – 07:30 pm CET
    Hosted by Pro Rare. The event is fully booked. Participation is possible via live stream. For more information: https://www.prorare-austria.org/news/veranstaltungen/event/austrian-health-forum-netup-rare-disease-day-2024
  2. Danmark – Copenhagen – 29.02.24, from 03:30 – 04:45 pm CET
    Rare people march in public spaces: Gathering in front of Christiansborg to the Copenhagen City Hall. For more information: https://sjaeldnediagnoser.dk/oevrige-tilbud/sjaeldne-dagen/sjaeldne-dagen-2024/
  3. Finland
    HARSO, the Finnish umbrella patient organization, is organizing various events around RDD 2024. For more information please visit: https://harso.fi/hsp2024/
  4. Germany – Munich – 29.02.24, from 01:00 – 06:00 pm CET
    In the passageway of Hofstatt in the city centre of Munich, Sendlinger Strasse 10, you can help colour a live-size zebra.
  5. Germany – Neuss – 29.02.24, from 02:00 – 07:00 pm CET
    Children's painting competition at Rheinpark-Center Neuss. The initiators of the painting competition, NF und Freunde e.V. (neurofibromatosis), DMG (Deutsche Myasthenie Gesellschaft e.V.) and SAB (Scleroedema Adultorum Buschke Selbsthilfegruppe e.V.) look forward to seeing you there!
  6. Switzerland – Berne – 02.03.24, from 10:15 am – 04:30 pm CET
    ProRaris is organising the 14th International Rare Disease Day in Switzerland, which will take place at the Inselspital in Bern. More information and registration: https://www.proraris.ch/de/marz-2024-anlass-seltenen-krankheiten-649.html

Partners

Together we share colours for people living with a rare disease

With colourUp4RARE, the participating companies want to support the activities of the Rare Disease Day which was initiated in 2008 by EURORDIS – Rare Disease Europe and to pay more attention to people living with a rare disease. At the same time, awareness for improved framework conditions for research and development of new diagnosis and treatment options and for optimised care should be raised. So that people with a rare disease can enjoy an improved quality of life.

The Ravensburger's CreArt brand, known for many years as "painting by numbers", was the inspiration for the colourUp4RARE initiative.

This campaign supports people with rare diseases and the work of:

Rare Disease Day

ACHSE e.V.

Alliance Eva Luise et Horst Koehler

CORD

Einstok Börn

HARSO

Pro Rare

ProRaris

RQMO

Sjældne Diagnoser

VSOP

The colourUp4RARE partners 2024 vary per country. Collectively they are:

Alexion, Chiesi, Janssen-Cilag, Novartis, Takeda, UCB, and Ravensburger

The campaign is therefore available in numerous languages:

Danish, Dutch, English, Finnish, French, German, Italian, Norwegian and Swedish.

Sources

  1. Global Genes. (n.d.). RARE Disease Facts. [online] Available at: https://globalgenes.org/rare-disease-facts/
  2. EURORDIS. (n.d.). Our History. [online] Available at: https://www.eurordis.org/who-we-are/our-history/
  3. RARE X (n.d.). The power of being counted. [online] Available at: https://rare-x.org/wp-content/uploads/2022/05/be-counted-052722-WEB.pdf
  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. Haendel, M., Vasilevsky, N., Unni, D., Bologa, C., Harris, N., Rehm, H., Hamosh, A., Baynam, G., Groza, T., McMurry, J., Dawkins, H., Rath, A., Thaxon, C., Bocci, G., Joachimiak, M.P., Köhler, S., Robinson, P.N., Mungall, C. and Oprea, T.I. (2020). How many rare diseases are there? Nature Reviews Drug Discovery, [online] 19(2), pp.77–78. doi: 10.1038/d41573-019-00180-y
  6. The European Parliament (2000). REGULATION (EC) No 141/2000 OF THE EUROPEAN PARLIAMENT AND OF THE COUNCIL of 16 December 1999 on orphan medicinal products. [online] Available at: Official Journal of the European Communities
  7. Bundesministerium für Gesundheit (n.d.). Seltene Erkrankungen. [online] Available at: Bundesgesundheitsministerium
  8. Volksgezondheid en zorg. Available at: https://www.vzinfo.nl/zeldzame-aandoeningen
  9. The Danish National Board of Health, publications. Available at:The Danish National Strategy of Rare Diseases
  10. Status report of The Danish National Strategy of Rare Diseases
  11. EURORDIS - #30 million reasons for European Action on Rare Diseases. Available at: https://reasons.eurordis.org/
  12. Rare Diseases Denmark https://sjaeldnediagnoser.dk
  13. Harvinaissaurauksien kansallinen ohjelma / Rare Diseases national plan 2024-2028. Available at: Harvinaissaurauksien kansallinen ohjelma
  14. Harvinaisten ja geneettisten sairauksien maantieteellinen vaihtelu
  15. Sairauksien periytyvyys
  16. Vertaistukea ja keskustelua -ilta diagnoosittomille
  17. Genetiikkajaharvinaiset
  18. Jäsenyhdistykset