Interview with Camelia Isaic, the co-founder and chairwoman of HAE Junior, on the occasion of the fourth anniversary of the organization.

When, how and why was HAE Junior established?

Our organization was founded in Prague in 2019 as the initiative of several parents of pediatric HAE patients. The main motivation was based on the belief that together we can support Czech HAE juniors to achieve a better quality of life and a better future despite this rare disorder. As a patient organization, we can better defend the interests and rights of our patient community, help and inspire each other, raise disease awareness and gradually remove existing barriers that burden not only young HAE patients but also their families on the medical, social, economical as well as psychological level.

In December 2023, HAE Junior marks its 4th anniversary. What do you see as the main achievements of your efforts so far?

HAE Junior has been successfully accomplishing its goals – to support patient families of children with HAE, to provide information about the disease and related news, to bring together the patient community in the Czech Republic and to strengthen cooperation with experts both in our country and abroad.

Every year we organize an Educational camp for families of HAE juniors. The program is usually full of lectures by experts, practical workshops, and interactive activities for children while leaving enough space for discussion and exchange of experience. In 2022, we conducted a large-scale awareness campaign during the Czech Presidency of the Council of the EU, whose priority topic was, among others, rare diseases. We organized a very successful art exhibition with drawings by our HAE juniors, which was displayed in the Czech Parliament building (and some pictures were even presented at an EU parliament event) to raise disease awareness. A new series of drawings is a part of the latest HAE Junior calendar for 2024 on the topic "My Inspiration".

The member patient community appreciates our regular information service – we regularly publish news from our organization, research in the field of HAE or events in the Czech Republic and abroad.

The Infocentre section, which we added to the website last year, is also very helpful, with practical guides, tips and instructions for various life situations faced by families of HAE patients, including newly diagnosed ones. Among other things, we have translated into Czech awareness posters and children brochures published by the umbrella organization HAE International.

What plans and goals do you have for the year 2024?

First and foremost, we aim to keep the ongoing community activities, already established projects and patient information service at the same quality. 

For example, in February we’re going to join the annual Rare Disease Day campaign (29 February 2024) and in May another awareness campaign connected to HAE Day – both of which are great opportunities to spread awareness about HAE among the general public.

We are also planning another edition of HAE Junior’s Family educational camp, this time in Prague, as well as participation in various patient meetings and scientific conferences both in the Czech Republic and abroad. We will stay involved as a member in various initiatives – specifically in the working groups of the Patient Council of the Czech Minister of Health or in the Patient Council of the European Reference Networks ERN RITA, which focuses on advocating for patients' interests and improving access to medicines and services for a better quality of life of our HAE patient families.

How do you manage cooperation with experts and other partners to support HAE Junior activities?

When the patient organization was founded, we received the expert endorsement of the Department of Immunology, 2nd Faculty of Medicine, Charles University and Motol University Hospital in Prague. In addition, we were able to start cooperation with foreign experts, and thus the HAE Junior Expert Advisory Board was established in 2021.

We are an active member of national and international organizations, including the Czech Association for Rare Diseases (ČAVO), the National Association of Patient Organisations (NAPO), EURORDIS and HAE International (HAEi). Thanks to these partnerships, our members can regularly attend various patient conferences and share their patient experiences with others. 

We have received support from key commercial partners and foundations that helped us to successfully run our projects. The current list of partner organizations is available and regularly updated on our website. 

Each new partnership is rewarding for us and gives a new dose of motivation to work on improving the quality of lives of Czech HAE juniors.

What would you like to share with Czech children and youth with HAE & their families?

I wish them a beautiful future, and plenty of strength and motivation to become and remain HAEroes – people stronger than HAE despite all the challenges and pitfalls this rare disease brings to their lives.