About us

HAE Junior

HAE Junior is a Czech non-profit patient organization seeking to improve the quality of life of children and young people suffering from hereditary angioedema (HAE). The organization was established in December 2019 in Prague by a group of parents of HAE paediatric patients.

Our goals

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Actively support, represent and defend the interests of our patient members for a better quality of life, including access to modern medication, therapies and healthcare.

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Provide information and counselling on HAE issues in children and adolescents.

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Develop mutual cooperation and exchange of experiences among families with children/youth with HAE at both national and international level.

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Develop cooperation with health professionals, teachers and other specialists working with children and adolescents with HAE for their better integration.

HAE Junior Team

A team of volunteering members coordinate the management and operations of our patient organization.

Camelia C. Isaic, MBA, CFA, Chairwoman
info@haejunior.cz

Mgr. Monika Mackovíková, PR Manager
media@haejunior.cz

Expert Advisory Board

HAE Junior's Expert Advisory Board was established in 2021. The members of the Board are national and international experts. In cooperation with them, HAE Junior intends to offer educational projects for the patient community, provide quality informational services on the topic of HAE, coordinate research and publication activities, engage in patient advocacy and better defend the rights of children/young HAE patients and their families.

Marta Sobotková, MD

Marta Sobotková, MD is a senior physician at HAE Center in Prague, part of the Department of Immunology, Second Faculty of Medicine, Charles University and Motol University Hospital. She has many years of clinical experience with HAE patients and is often involved in HAE educational and awareness initiatives in the Czech Republic.

Prof. Henriette Farkas

Prof. Henriette Farkas founded (already in 1996) and directs the Hungarian Angioedema Center of Reference and Excellence at the Semmelweis University in Budapest, Hungary. She regularly gives lectures at world conferences and publishes research papers on the topic of HAE in pediatric patients and other types of bradykinin-mediated angioedemas.

Prof. Markus Magerl

Prof. Markus Magerl is professor of dermatology and a senior physician at Charité – Universitätsmedizin University Hospital in Berlin. The HAE Centre in Berlin also coordinates the activities of the international network ACARE – Angioedema Centers of Reference and Excellence.

Prof. Miloš Jeseňák

Prof. Miloš Jeseňák founded and directs the National Centre for Hereditary Angioedema in University Hospital in Martin, Slovakia. He regularly gives lectures at national and international congresses and scientific meetings and publishes research papers on the topic of rare immune mediated diseases in children and adults. He is focused on the inborn errors of immunity, angioedema and autoinflammation. He is also a specialist in the vaccination in special situations.

Projects & activities

Get involved

Everyone can get involved and help. It's just a matter of choosing the way that suits you best.

Membership

Membership forms are available in Czech language only.

You can send your duly completed and signed application form by post or deliver it in person.

You become a member once the application is approved and an appropriate membership fee is paid.

The minimum membership fee is CZK 100/year for members under the age of 18 and CZK 200/year for adults. You can send your membership fee to our bank account with a note that includes the YEAR and the member’s name.

HAE Junior
2001782429/2010
IBAN CZ7920100000002001782429
BIC: FIOBCZPPXXX

Volunteers

Are you looking for a meaningful opportunity to help as a volunteer?

If so, let us know and we will be happy to get you involved.

Donors

Do you want to help, but don't have time to get actively involved?

If so, you can become a regular or occasional donor to our organization. You can send/transfer your financial donations to our bank account. Donors interested in receiving a donation confirmation for tax purposes can send us their details to the contact email of our organization.

HAE Junior
2001782429/2010
IBAN CZ7920100000002001782429
BIC: FIOBCZPPXXX