May 4-5th 2019, over 800 people across 5 locations around Australia came together to walk and raise money for the inaugural Prader-Willi Research Foundation of Australia Finding 15 walk. The event was a huge success and raised over $90,000 for Prader-Willi research. Thank you to all the co-ordinators, supporters, donors and families who came together to make this event amazing. We hope to see you at next year’s event!
Wednesday 27th June 2018 - Dr David Segal - Prospects of gene therapy for Prader-Willi syndrome
Dr Segal visited Melbourne 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 held 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.
The family session webinar recording can be found here.
[Please note audio quality is resolved 14 mins into the recording]
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!