- HAE Barometer: This is the first HAE patient survey aimed at identifying the needs and perceptions of both paediatric and adult Czech patients. The study was conducted online in Q2 2020. The results were communicated in September 2020 as part of a dedicated webinar. HAE Junior intends to use the survey findings to define own advocacy priorities. This project is intended to take place each year, in order to monitor progress.
- Educational webinars “A Better Life with HAE”: A series of educational online webinars for families of HAE paediatric patients, aimed at increasing patient health literacy. The project was launched in June 2020 in cooperation with Czech and international experts.
- HAE Junior Newsletter: A digital informative newsletter for everyone interested in the topic of HAE. It is a monthly publication in Czech language. To sign up, visit www.haejunior.cz.
- HAE Junior Family Summer Camp: A community project aimed at supporting experience exchange and patient education of families with HAE children & youth. The first edition took place in summer 2020. The program included multiple educational workshops, talent discovery sessions, industry updates, advocacy intro, as well as motivational fun activities, such as the HAEro Games 2020. HAE Junior team would like this project to become a yearly tradition.
- Inclusive scholarships: “Skills for the Future”: This project aims to support competitive skill building and to foster social inclusion of HAE children and students. The project consists in granting partial/ full scholarships for HAE kids/ youngsters to attend digital skills and foreign language courses or camps.
In addition, HAE Junior actively participates in various national & international initiatives aimed at promoting patient advocacy and raising HAE/ rare disease awareness.
