For the first time in Greece, rare life meets culture through a multi-level festival dedicated to people living with rare diseases.

The 1st Rare Diseases Festival “Every Day is Rare” will take place from February 26 to March 1 at the Athens Municipal Gallery, highlighting the daily lives, challenges, and strength of rare disease patients through the language of art and culture.

The festival is organized by the Association “95”, Alliance for Rare Diseases, and is held under the auspices of the Municipality of Athens, with the support of OPANDA, with the aim of becoming a multi-level platform for expression, empowerment, and meaningful social dialogue around rare diseases.

In her statement, Mary Adamopoulou, President of the “95” Association, said:

”As President of Association 95, the Greek Alliance for Rare Diseases, I am thrilled to announce the first Rare Disease Festival, “Every Day is Rare.” This is an open call to society to learn about a reality that is often ignored, to the State to turn institutional provisions into action, and to healthcare professionals to strengthen knowledge and cooperation. Rare diseases are not rare as a life experience. They affect people, families, and daily struggles. Through information, awareness, and collective responsibility, we can make rarity visible and care meaningful — every day.”

My World, my writing

This philosophy is reflected in a series of artistic and cultural activities, centered around two art exhibitions: a photography exhibition entitled “Rare” and a painting exhibition entitled “My world, my writing.”

The photo exhibition entitled “Rare” by photographer Ypatia Kornarou captures rare diseases as human experiences through a documentary and conceptual work.

Photographer Ypatia Kornarou notes that: “The photographic exhibition ‘Rare’ is an emotional landscape of rare disease. The human body as a changing reality, the warmth of the family environment, the reinterpretation of an everyday experience, become the aid of a visual diffusion of the nature of rarity. From the outset, the journey is embedded with a universal narrative about the psychogram of diversity. Through a series of visual narratives, it raises questions, creates stimuli, and encourages the viewer to reexamine the ways of seeing that shape their perception of the world.”

Ypatia Kornarou

The painting exhibition entitled “My world, my writing,” featuring works by Nikiforos Nikolaos Kyriakoulakos, a rare patient and young visual artist, conveys through his art a deeply experiential view of diversity, identity, and human resilience. He emphasizes that “My world, my writing” is his first solo painting exhibition and he is delighted that it is part of the “Every day is special” festival, because he too feels special. I look forward to meeting people through my work and sharing my magical stories with them. I want the people who visit the exhibition to feel and embrace their uniqueness, just as we rare people embrace ourselves and recognize our uniqueness.”

My World, my writing

The screening of the award-winning short film “Rare Land” by director Efthymis Hatzis is part of the same context. The film, produced by Chiesi Global Rare Diseases, was screened in 2023 at the Marché du Film at the Cannes Film Festival and is being shown to Greek audiences for the first time, highlighting the challenges faced by people with rare diseases from diagnosis to access to treatment.

Rare

The festival program is complemented by the presentation of Ypatia Kornarou’s photo book “Rare,” a playback theater performance, experiential workshops for children, teenagers, and adults (performance, theater, literature, music therapy), as well as open discussions and round tables with the participation of caregivers, scientists, representatives of pharmaceutical companies, and civil society.

The festival ensures accessibility, while the exhibitions will include guided tours with interpretation in Greek sign language, as well as specially organized tours for schoolchildren in Attica, with the aim of raising awareness among the younger generation about rare life and inclusion. Admission is free and activities will take place daily.

For more information about the program and to register for the activities of the “Every Day is Special” Festival, interested parties can visit the official website of the “95” Association.:  https://rarealliance.gr/  

Υπατία Κορνάρου

The 1st Rare Diseases Festival “Every Day is Rare” aims to become a new institution for information, cultural expression, and social dialogue about rare diseases and their place in the modern world.

The 1st Rare Diseases Festival “Every Day Rare” is held under the auspices of the City of Athens and with the support of the Organization for Culture, Sports, and Youth of the City  of Athens.

The Greek Red Cross will provide medical coverage for the Festival.