Stories and interviews
ERN RITA HAE Patient Journey Now Available Online
New HAE Patient Journey available online on ERN RITA website.
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Official Patient Organization
Together, we empower children and youth living with HAE
We are a safe community, a trusted guide, and a voice for children and their families across the Czech Republic. We help navigate the daily challenges of hereditary angioedema, provide access to verified information, and build a supportive environment where no one has to stand alone.
What's new
All newsNews & Updates
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Events
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Events
Call for artwork submissions 2026: Stronger than HAE through Sports
Online submissions open until December 12, 2026
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Events
Weekend for Health (SHAPE Workshop)
When: November 27–29, 2026 Where: Hotel Atlantis, Brána 177, 664 34 Rozdrojovice
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Our Mission and Pillars
No child or family has to carry the burden of HAE alone
Hereditary angioedema is a rare genetic condition characterized by unpredictable swelling. At HAE Junior, we connect families, leading medical experts, and schools so that every child can experience a safe and happy childhood.
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#1
Supporting families and individuals living with HAE
Actively supporting, representing, and advocating for the interests of our members to ensure a higher quality of life, including access to modern treatments, therapies, and comprehensive healthcare.
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#2
Informing and advising
Providing up-to-date information, resources, and guidance on HAE in children, youth, and young adults.
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#3
Sharing experiences
Fostering cooperation and peer exchange among families raising children and adolescents with HAE on both national and international levels.
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#4
Collaboration for better integration
Collaboration for better integration. Developing partnerships with healthcare professionals, educators, and other specialists working with children and young people to promote the full integration of youth living with HAE into everyday activities and school life.
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#5
Supporting scientific research
Actively engaging in patient-centred scientific and clinical research projects within rare diseases and biomedical fields.
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Putting our goals into practice
Eurokeys, inclusive scholarships, educational retreats, art exhibitions, and international advocacy.
The power of shared experience
Stories and interviews
Behind every diagnosis is a real family. Read about what living with HAE is like and what helps others navigate it.
„For the first time without injections: an experience that changed my life“
My experience taking part in a clinical trial.
Read the story„Together we can ensure that patient needs are acknowledged and taken into account“
Interview with Camelia Isaic about the activities of the Plasma Protein Users Working Group (PUPP)
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How you can help
Support children and families with HAE
Everyone can get involved and help. It’s simply a matter of choosing the role that suits you best.
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Donations
Would you like to help, but don’t have time to get actively involved?
Donate (opens in a new window)