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 für Geschwisterkinder und Eltern von Menschen mit PWS 22.11.2019 - 24.11.2019

Workshop für Geschwisterkinder und Eltern von Menschen mit PWS

Der Workshop soll die gesunden Geschwisterkinder in den Mittelpunkt rücken und auf ihre Sorgen, Ängste, Nöte und Wünsche eingehen – ohne dass diese wieder Rücksicht auf das behinderte Geschwisterkind nehmen müssen. Dabei stehen auch die Eltern im Fokus, die sich häufig in einem Spannungsfeld zwischen Ängsten, Schuldgefühlen und Selbstvorwürfen befinden. Fragen wie „Werde ich auch meinem gesunden Kind gerecht?“ können quälend sein, da das behinderte Kind oft weit mehr Aufmerksamkeit bekommt als das gesunde. Ziel ist, „Ballast“ und Spannungen los zu werden.

Veranstaltungsort: DJH Limburg
Adresse: Auf dem Guckucksberg
Zeit: 3:00 pm
Tel: +49 (6431) 41493
Kosten: €50,00 - €100,00

Bemerkung(en):

kreuznacher diakonie: Best of PWS - Austausch 30.11.2019

kreuznacher diakonie: Best of PWS – Austausch

Wer ein Kind mit PWS hat, der muss oft einfallsreich und flexibel sein. Wir sind in der Beratung immer wieder beeindruckt von der Souveränität, mit der Eltern den Familienalltag meistern. Sie sind die PWS-Experten! Teilen und tauschen Sie Ihre besten Ideen und Einfälle, Ihre Tipps und Tricks. Alle sind herzlich eingeladen, zu erzählen und zuzuhören. Auch ungelöste Probleme und Fragen dürfen offen auf den Tisch. Profitieren Sie vom Ideenreichtum der Gruppe!

Die Teilnahme ist kostenlos, die Betreuungskosten für Kinder mit PWS liegen bei 10,65 € pro Stunde.

Bitte etwas für das gemeinsame Buffet mitbringen.

Wenn Sie sich bzw. Ihr Kind zu einer Veranstaltung anmelden möchten, senden Sie uns bitte eine Email an frickede@kreuznacherdiakonie.de. Sie erhalten dann das richtige Anmeldeformular und alle weiteren Informationen. Wir freuen uns auf Sie!

Veranstaltungsort: Kompetenzzentrum Prader-Willi-Syndrom
Adresse: Pfarrer-Reich-Straße 36
Zeit: 10:00 am - 3:00 pm
Tel:
Kosten: €0,00

Bemerkung(en):

Regionaltreffen Berlin 07.12.2019

Regionaltreffen Berlin

Anmeldung und Info: Günther Oefelein (Kontaktdaten siehe unten!)

Veranstaltungsort: Pestalozzi-Treff
Adresse: Pestalozzistr. 1a
Zeit: 3:00 pm - 5:00 pm
Tel: 030 40636273
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