PatientsCelebrating another year of diverse initiatives around the world: RDD 2022 in EMEA

Image: The key visual of the internal Rare Disease Month campaign at the DACH cluster.
“Unique” was the theme of the campaign. (partially modified from the key visual used by the company)

Begun in Sweden in 2008, Rare Disease^*1 Day (RDD) is observed on the final day of February every year—on the 28^th, or 29^th in leap years—to coincide with the “rarest day” of the year. The goal of this day is to work towards improving the quality of life of people living with rare diseases through better diagnosis and therapy, and there are many different initiatives run in tandem with it each year.

In recent years RDD events have been held in 100 countries, making it the world’s largest public awareness activity for rare diseases.

Kyowa Kirin’s philosophy is to “contribute to the health and well-being of people around the world, and they put focus on patient advocacy (PA)^*2 that aims to value patients’ own experiences when creating better healthcare and living conditions.

RDD calls for greater support from the patient’s perspective so that no one with a rare disease is left behind, and can be seen as a day that embodies PA and Kyowa Kirin’s philosophy. This is why each year in the period surrounding RDD, Kyowa Kirin works to raise awareness in each global region and calls for understanding and support, both within the company and amongst the general public. So what kind of activities were held in Europe, the Middle East and Africa?

At Kyowa Kirin subsidiary Kyowa Kirin International, the DACH Cluster (Germany, Austria and Switzerland) ran an internal campaign under the slogan “People living with a rare disease are also unique.” They say, “The overarching idea/goal of the campaign has been de-stigmatization: Every one of us is unique, and everyone is special in his/her own way. Life in itself is unique. Hence, people living with a rare condition should not feel singled out or stigmatized or different from other people.”

One of the most notable activities from the campaign was the unique “tree of fingerprints.” For this project, employees hung up a poster of the trunk and branches of a tree at the DACH headquarters. Colleagues then had the opportunity to join in giving the tree foliage by using an orange ink pad to create a leaf with their fingerprint.

The process of leaves gradually growing in number across the tree was recorded and made into a video, and when the tree was complete, a picture was taken and turned into a postcard that was given to employees. They chose to use a tree for the activity to symbolize strength and honor, and the collective uniqueness of each employee was united to complete the illustration and serve as a sign of solidarity with patients of rare diseases. The idea behind the project was popular with employees, and many still have the postcard decorating their desks.

The company has also used the media to promote awareness and understanding of rare diseases. The Central Cluster (France, Belgium, the Netherlands and Luxembourg) published an advertorial about RDD in the national edition of the French newspaper Le Monde. Kyowa Kirin France president Emilie Bugeat-Toussaint was interviewed for the piece and explained the company’s initiatives.

Video: The news program “Shining a Light on Rare Conditions”

In another media-based initiative for the entire company, Kyowa Kirin International president Abdul Mullik and executive vice president Danie du Plessis appeared on the online news program “Shining a Light on Rare Conditions” produced by Genetic Alliance UK, which is formed of over 200 organizations for patients with genetic diseases. On the program they spoke about the challenges faced by people with rare diseases and explained how the company is striving to improve their lives.

Kyowa Kirin International has used the power of art and the media to help boost understanding of rare diseases both in and outside of the company. It would be wonderful to see more creative and engaging initiatives focused on the idea of uniqueness to support the rare disease community.

[Related: Celebrating another year of diverse initiatives around the world: RDD 2022 in Japan]

The activities mentioned in the article were conducted in the EMEA Region under the relevant laws and regulations of each country.