Parents Guide: 0-12 months for parents who have received a diagnosis of Prader Willi Syndrome for their baby. Navigating PWS with your newborn may feel overwhelming, but you’re not alone. This booklet provides invaluable next steps and inspiring photographs showing children thriving with Prader-Willi Syndrome (PWS). Published 2024

When your baby is in NICU.  A guide to health care and feeding. A pdf resource by PWSA (USA), 2013. 

PWS and Growth Hormone.  A video by FPWR providing a short, clear overview of this therapy and its benefits 

Growth Hormone Therapy in Prader-Willi Syndrome.  A film featuring Dr Charlotte Höybye and people with PWS and their families by PWSAI and IPWSO. 

Dr. Harold van Bosse and Janice Agarwal on Orthopedics, Scoliosis and PWS presented at the FPWR 2017

Therapeutic Interventions for the Child with PWS. Written by Janice Agarwal 2011 PWSA USA

First Steps a Guide to Prader Willi Syndrome by Foundation for Prader Willi Research (FPWR)

Therapeutic Interventions for the Young Child with PWS.  A video by Janice Agarwal, in association with PWSAI, PWS (USA) & IPWSO.  Janice is a paediatric physical therapist who works solely with children who have PWS.  She has lectured internationally on Developmental Interventions and Sensory Integration for hypotonic children and children with Prader-Willi Syndrome. 

Dietary Management in Prader Willi Syndrome. A film featuring people with PWS and their families by PWSAI and IPWSO.

Route Map for Parents and Carers of Children with PWS aged 0 – 5 years.  Please remember PWS is a spectrum disorder, your child may not experience all of these symptoms.

Breast Feeding your baby with PWS. 

A guide by Libby Johnson 2020.

The Young Child with Prader-Willi Syndrome Physical and Sensory Issues and Recommendations by Janice M. Agarwal in association with PWS USA. 

Standards of care for PWS by Dr. Jennifer Miller in association with FPWR.

Financial Supports available in Ireland You are entitled to some financial supports. We advise you to apply for these as soon as you can.