New Parent Resources
Parents – Get your New Parent Pack here!
Our New Parent Pack is free to families with a newly diagnosed child. It includes general information leaflets for friends and family, 2 Medical Alerts booklets, a copy of the Breastfeeding Your Baby with PWS booklet, and offers information on issues such as diet, growth hormone and support. Please complete a brief membership form to receive your family copy. Joining the PWSA(NZ) is free for families and you will also receive a free copy of Urs Eiholzer’s book ‘Prader-Willi Syndrome’ which provides a clear and easy to understand overview of the syndrome. Scroll down for further new parent resources…
Professionals – Order New Parent Packs here!
We would like to ensure hospital neonatal units and genetic services have current copies of our New Parent Pack to provide to families upon diagnosis. (These packs will contain a voucher /PWSA membership form for the Urs Eiholzer book.) If your department requires further copies, please complete the form below.
Please also complete the form below if you are a professional working with families and require a copy or pdf version.
(Our resources are free for members – please note, you will automatically become a Limited Member.)
Request Form for Professionals
Further New Parent Resources
Breastfeeding Your Baby with PWS. A guide by Libby Johnson, 2020. Available in our New Parent Packs and via pdf here.
When Your Baby is in the Hospital NICU
A pdf resource by PWSA (USA), 2013. A guide to health care and feeding.
Nutritional Intervention for Infants with PWS
In this video Dr. Ann Scheimann discusses feeding interventions for infants with PWS.
Therapeutic Interventions for the Young Child with PWS. A video by Janice Agarwal, an experienced physical therapist with expertise in PWS – developmental interventions and sensory integration.
Growth Hormone Therapy in Prader-Willi Syndrome
A film by PWSAI and IPWSO featuring Dr Charlotte Höybye, people who have PWS and their families. More about GHT and its availability in NZ on our Growth Hormone page.
Growth Hormone Therapy for PWS
A video by FPWR providing a short, but very clear overview of this therapy, its benefits and initiating treatment. Read more about GHT in NZ here >
Our Babies and Children
A collection of stories by families which provides a positive outlook for new parents. This book by PWSA UK, a similar publication by PWSA USA, and other useful resources for new parents can be borrowed from our PWSA Library.
PWS Diagnosis? Hear our message of HOPE
A heartwarming video by FPWR featuring the families of children with PWS.
A New Diagnosis of Prader-Willi Syndrome
An informative film by PWSAI and IPWSO featuring Dr. Suzanne Cassidy, people with PWS and their families.
What is Prader-Willi Syndrome? by FPWR
A brief overview video; includes how PWS occurs, some of the challenges and promising research.
PWSA UK New Diagnosis Video
Advice for families who have received the news that their child has PWS.
What Would You Tell Yourself? by FPWR
Parents share what they would tell themselves if they could go back in time to the day of diagnosis.
PWSA (USA)’s Parent Workshop Video
An uplifting video for new parents.
An Introduction to Prader-Willi Syndrome
These can be found inside our New Parent Pack, but if you require further copies to share, please contact us or order via our Publications and Resources page.
NZ Prader-Willi Support Community (Parents)
A private Facebook group for sharing experiences, supporting and seeking advice from each other.
Raising a Child with a Rare Disorder A guide for parents & caregivers living in Aotearoa New Zealand.