At the beginning of 2022, we take the opportunity to introduce some of our main activities and projects for this year.

HAE Information services (not only) for patients

One of the main objectives of our organization is to inform patients, healthcare professionals and the general public about the latest HAE-related updates. After all, access to HAE - related information is also what patients repeatedly identify as one of their priorities in surveys.

In 2022, we will continue distributing out HAE Junior monthly newsletter (in Czech), available for sign-up HERE. We will further spread the news about treatment options, changes in legislation, activities, as well as interviews with experts and patient stories both on our website and on social media pages Facebook, LinkedIn (in English) and Instagram.

Awareness campaigns for undiagnosed patients, the general public and healthcare professionals

We believe that education can also help those who do not yet know about their HAE diagnosis. The first campaign in 2022 will be a part of the Rare Disease Day, which this year falls on February 28, 2022. This year we are going to prepare an HAE Junior art exhibition from 18 February to 11 March, which will be presented in the atrium of the 2nd Faculty of Medicine, Charles University, on the premises of the University Hospital in Motol, Prague.

We will target this campaign primarily at medical students and future physicians. And this is exactly what the new ambassador of HAE Junior Anežka will help us with, as she is both a medical student and at the same time a popular Czech influencer and YouTuber. More information about other disease awareness projects will follow throughout the year. 

Third edition of HAE Junior Educational family summer camp

In 2022, members of our patient community can look forward to the popular educational summer camp, which we are planning this time from 31 July to 3 August in Vysočina region. As in the past years, we are going to prepare expert workshops & lectures, bring together the patient community, facilitate experience exchange, as well as sports or motivational activities for the youngest participants. Registration is already closed, but replacement candidates can still sign up. 

The feedback from parents and children / young people from previous years was very good, and we therefore warmly invite families of HAE juniors to join us this year as well.

International workshop during the Czech Presidency of the EU

In the second half of the year, during the Czech 2022 Presidency to the Council of the EU, we are planning an international online workshop on the topic of “Empowering rare disease patients for a better quality of life. The case of HAE as an example.“ We will provide more information about the project during the year.

We believe that this summary has got you interested – in the coming months, we are going to prepare additional awareness campaigns, activities in support of patients' rights and their interests, as well as more updates.

We greatly appreciate your virtual support, sharing, liking, etc.!