We organise regular conferences and family support events, which you would be very welcome to attend. We have a very active Facebook page, which we use to share news and keep in touch. If your child has recently been diagnosed with Prader-Willi Syndrome and you would like more information or just to chat to another parent you can email Ann O’Neill on firstname.lastname@example.org or phone her on 087 2522832. You can also contact PWSAI via Facebook.
We also recommend you watch the following New Diagnosis film, which PWSAI released in late 2014:
Other films in this series that you may be interested in are:
- Growth Hormone Therapy in Prader-Willi Syndrome
- Dietary Management in Prader-Willi Syndrome
- Therapeutic Interventions for the Young Child with PWS
If you are interested in finding out about financial supports that you may be entitled to please see this document [Version: March 2016].
If you are interested in an overview of health issues associated with PWS in young children and medical supports typically required please see this document.
If your baby is still in hospital please see this 2013 resource from PWSA USA:
As you may have already discovered, there is a lot of information about PWS available online! However, many internet resources offer contradictory messages about what PWS is or might mean for an affected individual or their family. Many more are outdated and tell stories of how PWS appears to have affected some individuals before early diagnosis and current medical and therapeutic interventions became common. If you are looking for information in relation to specific aspects of PWS please contact us and we will try to direct you to the most relevant and up to date publications.
Hope to hear from you soon!