In an emergency situation, you often come into contact with professionals who have never heard of our condition and do not know what to take into account. And sometimes there is also a language gap! That is why we have developed the Alarm Card: a card (medical passport) that you can take with you and where all important information is summarized in the language of your destination. Families with a child with a rare condition are not alone. They come into contact with other parents through patient organisations (PGOs). Doctors and experts often know little about rare diseases. In order to close that knowledge gap, a number of patient organizations together have developed WaihonaPedia. Here families, carers, doctors, experts and researchers can develop knowledge together. One of the ways in which this is done is by filling in questionnaires. Parents learn about their child, doctors and experts are prepared for a hospital visit by the person with the syndrome and learn more about the rare condition. But filling in questionnaires is a lot of work and there is no direct reward (yet), so knives don't immediately see the value of it. The alarm card immediately gives that value. Volg deze drie stappen en print je Zorgkaart. Deze dienst is beschikbaar vanaf 23 Juli 2023. Waarom zou je een Zorgkaart willen hebben? Bekijk onze video en ontdek de voordelen!
After filling in the questionnaires, the parents can print out an A4 with information about the rare disorder, points of attention that need to be taken into account, person-specific characteristics and contact details of the person and the treating expert. During emergencies, relevant information is immediately available to doctors. The family can choose from several languages, e.g. when on holiday abroad. The card is foldable and easy to carry.3 stappen naar je Zorgkaart
De PTHS Zorgkaart
