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APO Summer School
Meeting of Patient Organizations with Journalists II.

Meeting of Patient Organizations with Journalists II.

Four patient organisations and four powerful stories were presented within the Academy of Patient Organisations at its annual meeting with journalists on 18 June 2024 at the Worklounge at Příkopy, Prague. In addition to the opportunity to film interviews with interesting personalities and patients, the journalists also had a chance to learn about the latest news related to the activities of these patient organisations and to get new data.

Using Angelman syndrome as an example, together with the Association of Gene Therapy (Asgent), we presented the topic of rare diseases and reported previously unknown number of patients living with this syndrome in the Czech Republic. In collaboration with Dialog Jessenius, we highlighted the problem of the lack of qualified physiotherapists specialising in the care of oncology patients. This physiotherapy focuses on the care not only after the treatment has been finished but also during the treatment itself, which is one of the basic treatment methods abroad.

The patient organization Better and Together pointed out that there is also a lack of hosts in the Czech Republic. These are volunteers who help families to take care of children with mental handicap and autism and take them into their homes for a pre-arranged time. So far, only ninety children in the whole republic have such a host, and more families are interested in getting this help. The press conference also included the topic of migraine, which was prepared for the media by the organization Migraine-help. It presented a new self-diagnostic questionnaire that anyone can use to test themselves for free and find out if they really suffer from migraine.

PRESS CONFERENCE – DIALOGUE JESSENIUS

PATIENT STORY – DIALOGUE JESSENIUS

INTERVIEW – DIALOGUE JESSENIUS

PRESS RELEASE – ASGENT

INTERVIEW – ASGENT

PRESS RELEASE – BETTER AND TOGETHER

STORY OF A PATIENT’S MOTHER – BETTER AND TOGETHER

PRESS RELEASE – MIGRAINE HELP

PATIENT STORY - MIGRAINE HELP

FIRST MEDIA OUTPUTS FROM THE APO MEETING!

Foto č. 1 - Zástupci pacientské organizace Dialog Jessenius

Foto č. 2 - Zástupce pacientské organizace Líp a spolu