Mental health care and the importance of physical exercise for paediatric HAE patients were the central themes of our awareness-raising campaign for Rare Disease Day, celebrated worldwide on Saturday, February 28, 2026. As every year, we dedicated the entire month of February to raising awareness about HAE and rare diseases in general.
The international campaign is coordinated by EURORDIS, which has declared the entire month of February as Rare Disease Awareness Month. At the national level, patient organizations and associations in each country are involved in raising awareness. In the Czech Republic, activities are coordinated by ČAVO, the Czech Association for Rare Diseases.
The aim is to raise public awareness of the people living with one of 6,000+ rare diseases, including HAE. These patients and their families often face a number of physical, psychological, social, and occupational challenges or barriers.
On February 9, the main event of our Rare Disease Day campaign took place at the Hradec Králové University Hospital – an afternoon of lectures dedicated to hereditary angioedema with the opening of the art exhibition My Inspiration. In the first part, a series of expert lectures on HAE was presented by a team of specialist physicians from the Institute of Clinical Immunology and Allergology at the University Hospital in Hradec Králové. The session concluded with the opening of the exhibition of drawings and paintings by HAE juniors, which remain on display until the end of February.
We have published a new educational leaflet for children and adolescents, "HAE and Anxiety", in collaboration with psychologist Věra Reichlová from the Department of Pediatric Hematology and Oncology at Charles University and Motol University Hospital in Prague. It focuses on the negative psychological effects of HAE and anxiety management. Readers will find information on coping mechanisms for anxious thoughts and their typical triggers, and will learn when and where to seek professional help. The brochure can be downloaded from our Infocenter on our website, or we can send it by mail. You can find more information in this article (in Czech).
And finally, we would like to inform you that the HAE Patient Journey has been published on the website of the European Reference Network ERN-RITA. As you can read in our article, the document features Laura – a fictional HAE patient whose story reflects the real-life experience of many HAE patients and caregivers, as well as the typical journey from the first symptoms to diagnosis, treatment and daily management of the disease. The project, carried out in accordance with ERN RITA methodology, involved patients and caregivers under the leadership of HAE Junior, among others.
As the Rare Disease Day 2026 campaign draws to a close, we want to thank everyone who has shown their generosity and goodwill in helping to bring more joy to the lives of the HAE Junior patient community and all people with rare diseases around the world!
You can send your financial donation also to our bank account 2001782429/2010.
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