An exciting and eventful day is planned for Rare Day on February 29. Several hundred people from across the country are expected to participate in the day, which is an international awareness day for rare diseases and disabilities.

Rare Diagnoses has chosen to focus on "the rare civil society" during the marking of Rare Day in 2024.

– Rare Diagnoses is an association of 55 small voluntary organizations and the Rare Network for citizens affected by diseases that are so rare that there is no association. Networks and associations all play a particularly important role, as this is where experiences and knowledge can be shared, says communications officer at Rare Diagnoses, Julie Schmidt Hansen.

A disease is considered rare when one to two people out of 10,000 have it, and in Denmark, it is estimated that 30,000-50,000 have one of the 800 rare diagnoses currently known – many of these patients are children.

With a donation of 50,000 kroner, "Fonden Sol og Strand by Margit og Kjeld" supports the day, which begins with a half-day conference at Christiansborg, where the hope is to put political focus on rare diseases and disabilities as well as the importance of strong patient associations. Following this, a Rare March is organized from Christiansborg to Rådhuspladsen.

– The purpose is both to raise awareness about the conditions under which people with rare diagnoses live and to spread knowledge about rare diseases and disabilities, says Julie Schmidt Hansen, adding that it is also hoped to create a memorable day for the participants.

– Furthermore, the aim is to create the framework for a positive, inclusive community across diagnoses and life situations. Isolation and loneliness are unfortunately a well-known phenomenon among rare citizens. Concrete events like Rare Day can help break the isolation for a while, she says.

The Rare Prize 2024 will be awarded

One of those looking forward to the day is 16-year-old Silas Roest, who suffers from Crouzon syndrome, characterized by congenital growth-related deformities of especially the skull and facial bones. His unusual appearance has meant that he has been the subject of bullying and uncomfortable situations. Besides hopefully raising awareness about all rare diseases and disabilities, it is a good opportunity to socialize with others in the same situation.

– I am really looking forward to it because Rare Day only takes place every 4 years. I am excited to meet both those I know and new people. It’s great that we can be together on Rare Day, even though we don’t have the same conditions, says Silas Roest.

The day concludes with a joint event at the House of Industry, where there will be a premiere of a special "Rare Song" and the Rare Prize 2024 will also be awarded. The prize is given to a person or organization that has done something special for people with rare diseases.

The couple Margit and Kjeld Andersen established Sol og Strand Holiday Home Rental A/S in 1979. The couple has now transferred ownership to a foundation with the desire to both preserve and develop the business in Danish hands and to support charitable and local causes. Thus, a long-standing dream has come true.

– For us, it is important to support a day like Rare Day, which hopefully can help break down prejudices and create understanding for people who have a rare diagnosis. It can feel lonely to feel different, and Rare Day provides an opportunity for community and knowledge sharing, say Margit and Kjeld Andersen.

In total, the foundation donated nearly three million kroner in 2023, and the expectation is that this amount will increase in the future.