Annual Conference 2014

WELCOME. On 17 September 2014 PWSAI will welcome world-renowned speakers on PWS from the US, the UK, Germany, Denmark and Australia as well as Ireland for its 2014 conference. The programme will feature presentations that focus specifically on Prader-Willi Syndrome in adults, presentations that focus specifically on Prader-Willi Syndrome in children, and presentations that will be of relevance to both groups. The topics covered include residential care provision, health issues, physical therapy, genetics, and advances in PWS research.

All of the international speakers who will present at this conference are affiliated with the International Prader-Willi Syndrome Organisation (IPWSO) and PWSAI is very grateful for IPWSO’s support in organising this event. PWSAI is also very grateful to the organisers of the Galway Cycle 2014 and to the Hospital Saturday Fund for the generous financial support they have provided for this conference.

  • All intended delegates are requested to refer here for important information about the conference
  • Biographical notes about the speakers can be found here
  • For the conference poster, click here
08:15-09:00 Registration and coffee
09:00-09:15 Welcome and introductions

Overview of supported living for adults with PWS in Germany

Hubert Soyer
General Manager, Regens Wagner Absberg


Healthcare for adults with PWS and evolution and development of adult services in Denmark

Susanne Blichfeld
Paediatric Senior Consultant


Family Care and physical therapy for people with PWS

Georgina Loughnan
Physiotherapist, Metabolism & Obesity Services, Royal Prince Alfred Hospital, Sydney


Questions to panel

12:00-13:00 Lunch

The genetics of PWS

June-Anne Gold
Associate Professor in Paediatrics, Division of Genetics, Loma Linda University Medical Center CA and UCI
United States


Profile of a Prader-Willi specific clinic

Judith Meehan
Assistant Professor of Paediatrics, National Children’s Hospital, Tallaght and Trinity College Dublin


PWS from a research perspective: How are new interventions developed?

Tony Holland
Health Foundation Chair in Learning Disability, University of Cambridge
United Kingdom

15:00-15:15 Coffee

Overview of health issues for children with PWS

Suzanne Cassidy
Clinical Professor of Paediatrics, University of California, San Francisco
United States


Questions to panel


Services offered by IPWSO

Giorgio Fornasier
Director of Programmes, IPWSO


Overview of current PWS research

Janalee Heinemann
Director of Research & Medical Affairs, Prader-Willi Syndrome Association (USA)
United States

The Conference Venue is Bewleys Hotel Dublin Airport

This Bewleys Hotel offers a free 24-hour shuttle to and from Dublin Airport, which is 7 minutes away. Located just off the M1/M50, it has a regular bus service to Dublin’s centre, which is just 8 miles away. >> Contact: // Telephone: 01 8711000 (Direct Dial)

How to Register

Advance payment and registration for this conference are essential – it will not be possible to register and pay on the day.

Due to generous sponsorship from the Galway Cycle 2014 and the Hospital Saturday Fund the conference fee is only €15 per person, which includes lunch and other refreshments.

Registration is now OPEN. To register, click here (links to


For queries, contact Ann Grassick on (087) 9354914 or

For the Media

Prader-Willi Syndrome is a complex genetic disorder that typically causes low muscle tone, short stature, incomplete development of the genitalia, cognitive disabilities, and problem behaviours, and is probably most recognised by a chronic feeling of hunger that can lead to excessive eating and subsequent life-threatening obesity. The condition, which is caused by the absence of certain genes on chromosome 15, was first described in 1956 by Swiss doctors Prader, Willi, and Labhart. For further information, see our PWS FAQ here.