About the Association

Founded in November 1991, we are a self-help organisation with more than 750 members dedicated to the Prader-Willi Syndrome (PWS), whether they are parents of a child with PWS or actual sufferers themselves. Many renowned specialists are included among our consultants. We pride ourselves on already having achieved and initiated many things. However, a lot still lies ahead of us. Perhaps you have just learned that your child has Prader-Willi Syndrome and are now faced with a vast number of questions. It’s a good thing you found us. We would be pleased to welcome you into our circle and support you with all our experience, knowledge and compassion.

The Prader-Willi Syndrome has many different faces. This website is here to introduce you to the range of syndromes and guide you through the lives of people with PWS as well as the lives of their families and carers. Our special children grow primarily through our understanding, strength and love.

If we also take advantage of medical and therapeutic support at an early stage and support our children with PWS on a lasting basis, we can provide them with crucial support so that they can create vital roots in their lives. Get in touch! Exchange ideas with other parents! Our office and or our regional groups are always at your side, offering you advice and assistance.

We would be happy to send you our brochures, which we have published on various PWS topics. In addition, we organise parent-child meetings, events and workshops, often in cooperation with renowned PWS experts.  You can also talk to like-minded people in our forum.

In accordance with our statutes, we have made it our task to inform the public about PWS and its treatment options. We support projects to improve therapeutic measures. In addition, we promote the construction and maintenance of residential groups and facilities for people with PWS. If you need advice in your search for a suitable place to stay, our housing working group will be happy to help.

If you would like to become a member in order to make use of the various possibilities for personal contact, you will find the appropriate forms in the download area. And of course donations are always welcome!

Best regards, Your Prader-Willi Syndrome Association Germany e.V.

National groups contacts

Upcoming events

Workshop "Verhalten" 05.09.2020

Workshop “Verhalten”

Ziel dieses Workshops ist es, nach einer grundlegenden Einführung ins Thema, die Entstehung und die Ursachen von (Problem-) Verhalten bei Menschen mit PWS näher zu beleuchten und auf Grundlage dessen gemeinsam mögliche Interventions- und Präventionsmöglichkeiten zu erörtern. Dafür werden verschiedene Fallbeispiele herangezogen, die nach einem bestimmten Modell zur Analyse von Verhalten erörtert werden. Gerne dürfen Sie auch eigene Verhaltensbeispiele aus Ihrem Alltag mitbringen.

Der Workshop ist kostenlos. Für die Verpflegung am Mittag würden wir Sie gerne darum bitten etwas Herzhaftes nach Ihrer Wahl für ein Buffet mitzubringen.

Wenn Sie Kinderbetreuung beim Workshop brauchen, dann laden Sie dieses Formular herunter, füllen Sie es aus und senden Sie es an die Stiftung kreuzacher diakonie zurück. Ansonsten können Sie sich auch über unsere Webseite anmelden.

Kontakt:

Stiftung kreuznacher diakonie
Geschäftsfeld Leben mit Behinderung
Soziale Teilhabe

PWS-Kompetenzzentrum| PWS Beratung

Frau Laura Wilhelm
Frau Rita Bohland-Klein

Tel: 06751- 85 39 219
Mail: pws-beratung@kreuznacherdiakonie.de

Veranstaltungsort: PWS-Kompetenzzentrum – Stiftung kreuznacher diakonie
Adresse: Ringstraße 36
Stadt: 55566 Bad Sobernheim
Zeit: 8:30 am - 3:30 pm
Tel: 06751 85 39 219
Kosten: 0,00€

Bemerkung(en): Anmeldung über unser Online-Formular oder unter E-Mail an pws-beratung@kreuznacherdiakonie.de

Workshop "Sozial-emotionale Stärkung von Kindern mit PWS" 05.09.2020

Workshop “Sozial-emotionale Stärkung von Kindern mit PWS”

Inhalte

  • Besonderheiten der sozial-emotionalen Entwicklung bei Kindern mit PWS und Verhaltensbesonderheiten (Was bedeutet das für mein Kind?)
    Besondere Herausforderungen und Erziehungsaufgaben von Eltern mit einem Kind mit PWS (Was bedeutet das für uns als Eltern?)
  • Prävention von problematischem Verhalten und Konfliktmanagement in der Familie/ in der Kita (Was bedeutet das für unseren Alltag?)
  • Vorstellung von konkreten Materialen und Spielen zur Förderung der sozial-emotionalen Kompetenz (Spiele zur Körpererfahrung und zum Perspektivwechsel, Fördermaterialien, Bilderbücher etc.)

Veranstaltungsort: Lichtstrasse 43i
Adresse: Lichtstrasse 43i
Stadt: 50825 Köln
Zeit: 10:00 am - 5:00 pm
Tel:
Kosten: 25,00€

Bemerkung(en):

Familientreffen der Regionalgruppe Berlin / Brandenburg 12.09.2020

Familientreffen der Regionalgruppe Berlin / Brandenburg

Offener Treff der Regionagruppe Berlin / Brandenburg

Veranstaltungsort: Stadteilzentrum PestalozziTreff
Adresse: Pestalozzistr. 1A
Stadt: 12623 Berlin-Mahlsdorf
Zeit: 12:00 am
Tel:
Kosten: 0,00€

Bemerkung(en):

Causes, developments and phases of the WPS

Toddlers

It makes progress. The quiet, motionless baby has become a charming toddler who becomes more mobile and usually learns how to crawl at the age of 15 – 18 months. With its gentle little voice it often draws attention to itself and tries to babble its first words …

Genetic Causes

Each human cell consists of a complete set of chromosomes consisting of 2 sex chromosomes, which determine the sex of a human being, and 22 pairs of chromosomes, each carrying the genetic information of the mother and father. All 46 chromosomes carry our genetic material …

Food Addiction

It is not chronic physical hunger that makes people with PWS feel compelled to eat. Rather, hunger is in the mind and is essentially owed to two aspects:  People with PWS do not know what “to be full” means because their hypothalamus does not provide them with a feeling of fullness. In addition …

Schoolchildren

Going to school is an exciting event for children. Children with PWS also carry their school bag with great pride and in joyful expectation of the things that lie ahead of them. When choosing the right school, parents should focus on what their child is comfortable with and in which areas they need support …

Health from A-Z

Learn more about individual body characteristics