Wednesday 27th June - Dr David Segal - Prospects of gene therapy for Prader-Willi syndrome 

Dr Segal is visiting from the Genome Center at the MIND Institute, University of California, Davis. He is coming to Australia at the invitation of the Foundation for Angelman Syndrome Australia (FAST). FAST are holding a seminar in Sydney that you can find out about here. Research in the Segal lab focuses on genome engineering for gene therapy and his research has the potential to lead to treatments for PWS.

In collaboration with the Murdoch Children's Research Institute, PWRFA will be hosting a scientific seminar for scientists, clinicians and other interested in Dr Segal's work from 4pm-5pm. Please see details here.

We will be hosting a family session with Dr Segal from 7-8pm. This will also be available as a webinar for those wanting to join the session remotely or to listen later. Please see details here.

Please check this page for webinar details closer to the date.


The 4th Asia Pacific Prader-Willi Syndrome conference 18-20th October 2018

The Australian and New Zealand Prader-Willi Syndrome Associations are hosting the 4th Asia Pacific PWS conference. The conference provides opportunity for scientists, professionals, parents and caregivers to join together, providing a forum to share expertise. Details of the conference can be found here


Rare Voices Australia National Rare Disease Summit -16-17th November 2018

The biennial Rare Disease Summit will take place on the 16th and 17th November 2018 at Bayview Eden Melbourne. All rare disease stakeholders interested are asked to express interest here.


PWS Awareness Month - May

May is Prader-Willi syndrome awareness month. Ways to get involved:

  • You can join us in raising awareness on the need for research by checking out the how to take action page on our website.
  • You can download our brochure to use to support fundraising activities here
  • Join the efforts of Prader-Willi parent support associations across Australia and New Zealand by "Going Orange for PWS".
  • Spread the word about Prader-Willi syndrome on social media and your community!