(from left to right) Erich Irlstorfer, Member of the Bundestag and of the Health Commitee; Josef Kammermeier, Chairman 'Nothing is Forever e.V.' of the parent organisation Neurofibromatosis; Klaus Holetschek, Chairman of the CSU parliamentary group in the Bavarian State Parliament; Andrea Passalacqua, VP and General Manager Alexion Pharma Germany; Dominika Kowalski, Director Government Affairs and Policy, Alexion Pharma Germany; and Stephanie Ralle-Zentgraf, Director Communications Alexion Pharma Germany.
(from left to right) Nicole Schwarzer and Susanne Fröhler, SoMA Freundeskreis, Germany
Richard Lange, First Chairman of NF & Freunde e.V., testing the pens for colouring the zebra at the colourUp4RARE public event with a painting competition for children on 29 February 2024 in Neuss, Germany.
The drawing that was favoured by the jury in the colourUp4RARE painting campaign in Neuss, Germany, on February 2024.
Alexion Team Switzerland celebrating Rare Disease Day 2024 at the offices in Baar, on 29 February 2024, colouring up a little version of the life-sized zebra to help raise the voice for parents around the world living with a rare disease.
Alexion Team Canada preparing for Rare Disease Day at the offices at Mississauga, Ontario, in February 2024.
UCB UK celebrating Rare Disease Day 2024 at Trafalgar Square
Her Majesty Queen Mary is the Patron of the WHO Regional Office for Europe. On 29 February 2024, she honoured the event in Copenhagen, organised by the Danish parent organisation Sjældne Diagnoser, by painting the life-size colourUp4RARE zebra statue together with children living with a rare disease.
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 Rare Disease Day 2024, we stood together to illuminate the path for those affected by rare conditions. Our commitment to raising awareness knows no bounds, transcending borders, and bridging hearts.
From Pixels to Real-Life Impact: Our mission extended beyond the virtual realm. In Munich, Berlin, Copenhagen, London, and other cities far and wide, people came together at the action booths to get active, learn from experts, patient advocates, exchange with policymakers and help colour up life-sized zebras. The colourUp4RARE campaign resonated across borders, from Germany to Denmark and Canada, uniting voices in a harmonious chorus.
Get a glance of the compassioned activities around RDD and the vibrant colourUp4RARE activities in February 2024 by emerging into some exciting visual impressions, available under "NEWS".
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.
"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.
Germany - Grevenbroich - Sunday, 28.04.2024, 13:00 - 18:00
"Self-help makes you strong". Together with four other "rarities", NF & Freunde e.V. will be celebrating Self-Help Day with 15 other self-help organisations as part of the "Cityfrühling" (City Spring) festival.
On Sunday, 28 April 2024, Grevenbroich will host a children's rally, a string bike, jumble sale, a painting activity, a life-size zebra to paint on and lots of music. In addition to the many attractions for the whole family, children can especially look forward to Volker Rosin, the well-known German musician for children's songs.
Everyone is very welcome!
With colourUp4RARE, the participating companies are joining forces to support the activities of Rare Disease Day, initiated in 2008 by EURORDIS – Rare Disease Europe, 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 is 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.
In 2024, the colourUp4RARE campaign resonated across borders, reaching countries including Germany, Austria, Switzerland, Belgium, Denmark, Finland, France, Iceland, Italy, The Netherlands, Spain, United Kingdom, as well as Mexico and Canada.
This campaign supports people with rare diseases and the work of:
• Alliance Eva Luise et Horst Koehler
• CORD
• HARSO
• Pro Rare
• ProRaris
• RQMO
• VSOP
The colourUp4RARE partners 2024 vary per country. Collectively they are:
Alexion, Chiesi, Janssen-Cilag, Novartis, Takeda, UCB, and Ravensburger
During the campaign's peak time, information on this site are available in numerous languages:
Danish, Dutch, English, Finnish, French, German, Italian, Norwegian and Swedish.