On Friday, 16th of May, we celebrate again the HAE Day. This event aims to spread awareness about the rare disease hereditary angioedema (HAE) among healthcare professionals and the general public. The goal of raising HAE awareness is to diagnose the disease as early as possible and to emphasize the priorities of HAE patients to achieve a better quality of life. The patient organization HAE Junior has been regularly participating in HAE Day campaigns since 2020. For this year, we have prepared an interesting interview and information in Czech about the #active4hae campaign, organized by HAE International.

The new interview highlights the importance of volunteering for patient organizations

On the occasion of HAE Day, we have published an inspiring interview with Maria Beekman-Kortekaas, Chairwoman of the partner patient organization HAE The Netherlands. Maria is an HAE patient who lives in the Netherlands and who serves as an active patient representative at the national and international level and as a member of RIPAG within ERN RITA. The interview covers topics such as HAE awareness in Dutch healthcare organizations, the local situation regarding HAE diagnostics and treatment, including the participation of HAE patients in clinical trials. In addition, there are recommendations for HAE patients who are planning to work, study or travel in the Netherlands. Finally, Maria shares her views on volunteering for patient organizations and the benefits this brings to the patient community and the volunteers themselves.

Let's collect steps together in the #active4HAE campaign until 31 May

HAE International's campaign to collect steps for sports and leisure activities continues for another two weeks. Thus, you can still support our patient organization with your steps and at the same time move the Czech Republic up in the country rankings. It's simple – enter the number of hours you spent running, doing yoga, walking, or even reading a book on the website www.haeday.org and select your country.

This year's campaign uses the color purple as a symbolic reference to the Rare Disease Day campaign. HAE International therefore encourages people to incorporate the color into their #active4HAE activities – e.g. by choosing purple clothing, sports equipment, bookmarks, etc. We would love you to share photos with the purple theme and the hashtag #active4HAE on social media!

→ Find out more about this year's #active4HAE challenge

tHAEnk you for your support and involvement – you are helping us to spread awareness about the rare disease HAE and our patient organization HAE Junior!