About us

We actively advocate for the interests of people living with HAE at both national and European levels. We lead the Plasma Protein Users Working Group (PUPP) under ČAVO (Czech Association for Rare Diseases) and participate in the EU-X-CT initiative to improve access to cross-border clinical trials. We regularly participate in working groups of the Patients’ Council of the Ministry of Health of the Czech Republic, serve on the RIPAG Board of the European Reference Network ERN RITA, and take part in roundtables organized by EURORDIS, where we help shape systemic policy recommendations for rare diseases.

Following a successful application by our organization, people diagnosed with HAE in the Czech Republic have been able to request a „Eurokey“ (Euroklíč) since January 2025. This key grants quick and dignified access to locked public restrooms and elevators—allowing for timely, private self-administration of emergency treatment or necessary rest during a sudden attack. Cardholders can use the Eurokey throughout the Czech Republic as well as across all European Union member states.

We regularly conduct national and international surveys to map the real-life needs of families living with HAE. In 2025, in collaboration with the medtech company Semantic Hub, we completed an AI-powered European study focused on the challenges and quality of life of children with HAE, presenting the findings at scientific conferences. In our 2021 national survey (conducted under the expert auspices of the 2nd Faculty of Medicine, Charles University, and Motol University Hospital), we mapped the impacts of the pandemic and reinforced community priorities: broader access to preventive treatments and enhanced education.

In the first half of 2021, we ran a successful campaign supported by the ČEZ Foundation through the EPP: Pomáhej pohybem initiative to fund emergency thermal kits for the HAE Junior community. These sets included high-grade insulated cases equipped with necessary supplies for the safe transport and injection of acute medications during attacks. The project achieved its point target rapidly, raised substantial public awareness, and highlighted the everyday challenges of living with HAE.

We regularly organize international art exhibitions showcasing artwork created by children and young people with HAE and their peers. We showcase these creative works at major scientific events and publish them as high-quality wall calendars distributed to partners, physicians, and supporters. (Watch the video from our 2022 art exhibition in the Parliament of the Czech Republic).

We have repeatedly engaged in educational projects tailored for medical students across universities in Prague, Brno, and Hradec Králové. HAE Junior representatives share first-hand experiences regarding symptoms, diagnostic delays, and daily management, while introducing students to the advocacy and support work carried out by our organization.

We organize multi-day educational camps for HAE families. These gatherings combine lectures from leading medical experts and psychologists with safe spaces for peer exchange and psychosocial support for children and parents within the HAE community. (Read our summary of the 2026 HAE Junior Educational Family Camp).

We support delegations of young people with HAE and their caregivers in attending international meetings hosted by organizations like HAE International, EURORDIS, and IPOPI. These events provide access to lectures delivered by leading global experts. HAE Junior’s advocacy initiatives in the Czech Republic are frequently cited as best-practice models across Europe.

This ongoing initiative supports children and youth living with HAE up to age 26. We cover attendance fees for educational, athletic, and creative courses, camps, and specialized equipment. The program helps mitigate the physical and emotional burden of the disease, boosts practical skills, and fosters seamless integration with peers.

We serve as an active partner to the prestigious biennial scientific conference C1-Inhibitor Deficiency & Angioedema Workshop in Budapest. In addition to presenting scientific posters in the official program, we enrich the event’s cultural and awareness offerings through themed art exhibitions.

The President of HAE Junior, Camelia Isaic, served as co-author of the landmark paper International Guideline on the Diagnosis and Management of Pediatric Patients With Hereditary Angioedema. Published in January 2026 in the journal Allergy, this work was led by Prof. Henriette Farkas alongside an international consensus panel of dozens of leading HAE clinicians and experts.

We represent the patient and family perspective at key domestic and international scientific congresses. Our recent participation includes the IPIC 2025 congress and ECRD 2026 in Prague, as well as advancing scientific dialogues at the International Bradykinin Symposium in Berlin.