Publications and Resources
Nearly all our resources are available free of charge. To order resources within Aotearoa New Zealand, please use the order form below – sorry, we are unable to ship overseas. (Please note, you may be subscribed to receive some emails from us but can unsubscribe at any time. Please consider our membership options if you are not already a member.)
If you cannot find the information you are looking for below, or throughout this website, please contact us – we would be happy to recommend resources or put a collection together for you.
An overview of PWS and how to support a person living with PWS. Copies are included in relevant information packs or they can be ordered using the request form below.
Ideal for providing others with useful and need-to-know information in one brief publication, and easy to distribute to large groups of people, i.e. staff groups.
An Introduction to Prader-Willi Syndrome for:
- Whānau, Friends & Community
- Peers and Housemates
- Healthcare Providers
Coming soon for:
- Support Workers
- Educational Settings
Intro to PWS pamphlets – use the order form below, or you can view / download here:
Emergency Admission Patient Info
Folded A3 (similar idea to Health Passport, PWS specific). Aids clinical care & evaluation.
Please order your free copy from the
New Parent Resources page.
Living Healthy with PWS series by Latham Centers – Paul E. Donahue Jr, Exec Chef, Melanie Silverman, PWS Dietitian, Patrice Carroll, Director PWS Services.
-Cookbook & Nutrition Tips $15.60+pp
-Cookbook Supplement $8.90+pp
-Both books $20+pp (*save $4.50*)
Further discount for service providers.
Purchase via our cookbooks order form.
DOWNLOAD RESOURCES
PWSA(NZ) Information Resources:
- PWS Medical Alerts Poster
- Emergency Admission Info
- Behaviour Management for PWS
- Anxiety and PWS
- Managing Diet and the Food Environment (updated May 2019)
- Kitchen Locking Systems
- Teachers’ Pack (updated May 2019)
Other General Information Resources:
- Important Medical Facts – one page (IPWSO)
- Good Health Checklist (FamCare)
- Health and Wellbeing (PWSA VIC)
- Medical Overview (PWSA USA)
- Evaluation of GI complaints chart (also in new Medical Alerts book)
- Pittsburgh Partnership downloadable resources
- IPWSO’s downloadable resources
FACEBOOK GROUPS
The PWSA(NZ) has 5 support groups:
NZ Prader-Willi Support Community
A support network for parents of children and adults of all ages diagnosed with PWS.
Age-based Whānau Support
For parents of: 0-5 years, 6-12 years, 13+ years (teens and adults)
My PWS Online Network NZ
A chat group for those aged 16+ who have PWS and live in New Zealand (or Australia.)