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

Beratungstag Hannover - AUSGEBUCHT 25.06.2021

Beratungstag Hannover – AUSGEBUCHT

AUSGEBUCHT!

Es gibt aber noch freie Termine für den Beratungstag in Erfurt.

Bei den Beratungstagen bieten wir die Möglichkeit eines 90 minütigen Gespräches mit einem erfahrenen Psychologen für das Prader-Willi-Syndrom an. Hier geht es vor allem um Verhaltensproblematiken, aber auch um andere wichtige Themen wie etwa einen bevorstehenden Umzug in eine Wohneinrichtung.

Um einen Beratungstermin zu buchen klicken Sie bitte hier.

Ticketpreis für Mitglieder € 15,00 (Bitte Rabatt-Code Mitgliedsrabatt-Beratungstag in Warenkorb eingeben)

Ticketpreis für nicht-Mitglieder € 30,00

Termine:

9:00-10:30 Uhr, 10:45-12:15 Uhr, 13:00-14:30 Uhr, 14:45-16:15 Uhr

Veranstaltungsort: DenkRaum-List
Adresse: Rühmkorffstraße 18
Stadt: 30163 Hannover
Zeit: Ganztägig
Tel: 0511 990 4959
Kosten: 0,00€

Bemerkung(en):

Kletterfreizeit Much - AUSGEBUCHT 26.07.2021 - 30.07.2021

Kletterfreizeit Much – AUSGEBUCHT

Kletterfreizeit im Hotel Fit in Much. Feizeitangebot für Jugendlichen und Erwachsenen mit PWS.

Vom 26.7.2021 bis zum 30.7.2021.

Kosten für Mitglieder: € 520

Kosten für nicht-Mitglieder: € 620

Aufgrund der geltenden Einschrenkungen ist die Anzahl der Teilnehmer auf 10 Plätze begrenzt. Die Kletterfreizeit ist daher im moment AUSGEBUCHT.

Um Ihre/Deine Tickets zu erwerben, bitte hier klicken.

Veranstaltungsort: Hotel FIT
Adresse: Berghausen 30
Stadt: 53804 Much
Zeit: Ganztägig
Tel: 02245 60010
Kosten: 0,00€

Bemerkung(en):

Seminar "Wer ist mein Kind?" 11.09.2021

Seminar “Wer ist mein Kind?”

Schwerpunkt: Besonderes Verhalten von Kindern mit PWS im Alltag in der Familie

Was bedeutet das besondere Verhalten von Kindern mit PWS für die Familie im Alltag? Wie können die Eltern ihr Kind mit PWS stärken, fördern und erziehen?

Während des Seminars werden sich die Teilnehmer anhand der Anleitung von Frau Kramer mit diesen Fragen besonders beschäftigen. Frau Kramer bietet dabei viele praktische Erziehungstips und Anschauungsmaterialien.

Hier finden Sie mehr Informationen über unsere Referentin Frau Kramer.

 

Teilnahmegebühr für Mitglieder € 25,-

Teilnahmegebühr für nicht-Mitglieder € 50,-

Um Ihren Platz für dieses Seminar zu buchen, klicken Sie bitte hier.

Veranstaltungsort: Thoughtworks-Büro
Adresse: Caffamacherreihe 7
Stadt: 20355 Hamburg
Zeit: 10:00 am - 5:00 pm
Tel:
Kosten: 0,00€

Bemerkung(en): Wir bieten beim Seminar keine Kinderbetreuung an

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