An exciting and eventful day is in store when Rare Disease Day kicks off on February 29. Several hundred people from across the country are expected to take part in the day, which is an international awareness day for rare diseases and disabilities.

In 2024, Rare Diagnoses has chosen to focus on "the rare civil society" during the celebration of Rare Disease Day.

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

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 people have one of the 800 rare diagnoses currently known – many of these patients are children.

With a donation of DKK 50,000, Sol og Strand and Sol og Strand Foundation is supporting the day, which will begin with a half-day conference at Christiansborg, where the hope is to put political focus on rare diseases and disabilities and the importance of strong patient associations. This will be followed by a Rare Disease March from Christiansborg to Rådhuspladsen.

"The aim is partly to raise awareness of the conditions under which people with rare diagnoses live and partly to spread knowledge about rare diseases and disabilities," says Julie Schmidt Hansen, adding that it is also hoped that the day will be a memorable one for participants.

– Furthermore, the aim is to create a framework for a positive, inclusive community across diagnoses and life situations. Isolation and loneliness are unfortunately a familiar phenomenon among rare citizens. Specific events such as Rare Disease 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, which is characterized by congenital growth-related malformations, particularly of the skull and facial bones. His different appearance has meant that he has been the subject of bullying and unpleasant situations.  In addition to hopefully raising awareness of all rare diseases and disabilities, the day is a good opportunity to socialize with others in the same situation.

"I'm really excited because Rare Disease Day only takes place every four years. I'm looking forward to seeing people I know and meeting new people. It's great that we can get together for Rare Disease Day, even though we don't all have the same condition," says Silas Roest.

The day will conclude with a joint event at the Confederation of Danish Industry, where there will be a premiere of a special "Rare Disease Song" and the Rare Disease Award 2024 will be presented. The award is given to a person or organization that has done something special for people with rare diseases.

In 1979, Margit and Kjeld Andersen established Sol og Strand A/S. The couple has now transferred ownership to a foundation based on a desire to preserve and develop the company in Danish hands and to support charitable and local causes. This fulfills a long-standing dream.

"For us, it is important to support a day like Rare Disease Day, which we hope will help break down prejudices and create understanding for people who have a rare diagnosis. It can be lonely to feel that you are different, and Rare Disease Day provides an opportunity for community and knowledge sharing," say Margit and Kjeld Andersen.

In total, the fund will have donated just under DKK 3 million by 2023, and this amount is expected to increase in the future.