Where can I learn more?
www.rett-cz.com – Rett Community brings together parents of girls with Rett syndrome in the Czech Republic. On the group’s website, members share their experiences (health, nutrition, etc.) and inform each other about news from abroad (international conferences on Rett syndrome in Paris and Maastricht). The group also organizes assisted summer holidays for families. The website features links to other resources.
http://www.vzacna-onemocneni.cz/ – Czech Association for Rare Diseases
www.svp-vzacnaonemocneni.cz – Contains information on Rett syndrome – methodology, education, care.
www.zszahradka.cz – Once or twice a year, the Zahrádka Primary School organizes gatherings of parents and friends of girls RTT.
Many websites and other sources of information on Rett syndrome, including scientific studies, can be found in English. You will find Rett syndrome institutes in most European countries, the oldest being in Great Britain. Research into RTT is being conducted in Australia, the United States, Scotland, and other countries. In recent years, many new approaches to teaching girls with RTT have appeared (especially in the USA – Rett University). Once every few years, an international conference is held on RTT (Paris 2010, Maastricht 2013).
Long-term studies have shown how we can expect girls with RTT to develop with age, and have explored questions related to health, the possibilities of augmentative and alternative communication, ways of teaching girls with RTT, and the possibilities of diagnosing RTT by observing subtle changes in the behavior of infants and toddlers.
