'More than you can imagine' is the official theme of this year's Rare Disease Day which falls on Friday 28 February 2025. During the whole month of February, HAE Junior patient organization is also getting involved in this campaign by promoting awareness of HAE and rare diseases in general.

What is Rare Disease Day?

On an international level, the event is coordinated by EURORDIS, which declared February as the Rare Disease Awareness Month. In the Czech Republic, it is ČAVO, the 'Rare Diseases Czech Republic' association that oversees the campaign on the national level, in collaboration with the local member organizations.

The campaign aims to raise public awareness of living with one of the 6000+ rare diagnoses, including HAE (hereditary angioedema). These patients, as well as their families, often face many obstacles in physical, psychological, social and professional areas.

Buildings in the Czech Republic and worldwide will be lit up with the colors of Rare Disease Day

As you walk around the major cities of the Czech Republic on the evening of 28 February, you may notice that some buildings are lit up in pink, blue and green. This is part of an annual campaign which aims to reach as wide a public as possible, including passers-by on the streets of major cities.

This year's campaign highlights the variety of rare patient stories 

With over 300 million people living with one of the 6000+ rare diagnoses, it is no surprise that each of the patients has a unique story shaped by the illness, its symptoms, treatment options as well as the healthcare system in the region. The vast variety behind rare diseases is expressed in the motto ‘More than you can imagine’ and in the official campaign video.

What a lot of patients with rare conditions share is the risk of being isolated and struggling both at school and later in their careers. Rare diseases make it harder for these patients and their families to integrate into the social and healthcare system. This is also felt by paediatric HAE patients, who, due to the disease, are at higher risk of missing school, are often unable to participate in after-school clubs and as a result, find their career paths more difficult.

The Czech campaign for this year's Rare Disease Day therefore also highlights the need for better coordination of care and support services for rare patients to minimise the risk of isolation.

Rare Disease Day 2025 in HAE Junior

As members of ČAVO and EURORDIS, HAE Junior again joins the Rare Disease Day movement through awareness-raising posts on Facebook, Instagram and LinkedIn. We will be glad if you help share them! Should you want to get more involved, visit the official RDD website to check details of upcoming events in your area, read patient stories and find other relevant information.

Supporting the integration of young HAE patients into society is one of the priorities of our organization.

That's why we're pleased to introduce the benefits to our community members again this year. To help patients, we have recently facilitated access to 'Euro keys' for Czech HAE patients, and those interested in applying for them can contact our organization or pick another contact point on the list. In addition, the successful Inclusive Scholarships project continues to help improve the career status of HAE juniors in 2025. It supports HAE juniors in participating in educational, creative or movement courses, as well as camps free of charge. The purpose of the project is to reduce the negative impact of HAE on their quality of life and future.

Finally, we would like to tHAEnk! everyone who shows commitment and goodwill to make life more joyful for our friends from HAE Junior and around the world!