Rare Disease Day with SSC Rare Diseases

6.03.2024

Color Your Way to Awareness – it’s the phrase under which the Student Scientific Circle Rare Diseases active at the Department of Paediatrics, Haemathology & Oncology of the MUG as part of the preparing to the Rare Disease Day celebrated on 29th of February 2024. Before this day, at our University the SSC Rare Diseases prepared an initiative aimed at uniting patients, students and doctors and increasing public awareness of rare diseases.

Starting right at the Department of Paediatrics, Haemathology & Oncology and making the Branches of Rare Diseases – with palm prints of our young rare disease patients on the branches of the tree in rare disease colors: pink, green, blue, and purple. The art highlights each hand’s uniqueness, symbolising every patient’s individuality and the need for personalised approaches. The free spaces reflect the hardships in diagnosing rare diseases and were left for those still on their path to diagnosis. Pictures of the Branches of Rare Diseases were shared across social media platforms in an Instagram competition.

Moreover, in alignment with science and social media, the scientific circle organized the February Rareness Quest on @ssc.rarediseases Instagram stories. Throughout the month, students of MUG had the opportunity to participate and test their knowledge of general facts about rare diseases with prizes for winners.

The merge of knowledge, art, and activism was finally showcased at the stall in the Invasive Medicine Centre on the 29th of February 2024. There, passing patients, doctors, students and other visitors could “color their way to awareness” with an interactive poster. They were asked to leave a fingerprint at the number which they thought was the correct answer to the questions regarding the frequency, average time of diagnosis and treatment possibilities. The answers on the scale showed a wide variety, revealing a lack of public awareness.

Since nearly 80% of rare diseases have a genetic background, the continuation of the stall was recognising genetic syndromes from pictures, genes or their symptoms and a pamphlet on the basics of genetics. As a positive reinforcement of the acquired knowledge, the participants could grab a cookie in the pattern accompanying the initiative from the start – the form of a hand in pink, green, blue, or purple.

Creating a bridge of awareness connecting the facts, individuals, and issues surrounding rare diseases is a collective effort. On that day, over 7000 recognised rare diseases, impacting more than 300 million people, with the average diagnostic journey lasting five years, and the sobering truth that 95% lack approved treatments, all came together in a mosaic of handprints in four colors.

photos by Paulina Nalepa, Karolina Gruszka, Eka Grandhe, Khushi Chillar, Kornelia Polat/SSC Rare Diseases of the MUG