Useful Links

PWSA Victoria Support Line

Phone line is contactable 24hrs
Call now on 0451 797 284

Prader-Willi Syndrome Support for Aussies Facebook Group

This private Facebook group provides parents and carers of those living with Prader-Willi Syndrome a safe forum to discuss everything and anything Prader-Willi Syndrome related. At times this group can become quite overwhelming, therefore the group only allows parents and carers to join. Click here to access this Facebook Group.

Prader-Willi Syndrome Organisations around the world

International Prader-Willi Syndrome Organisation

Prader-Willi Syndrome Australia

Prader-Willi Syndrome Association of New Zealand

Prader-Willi Syndrome Association (UK)

Prader-Willi Syndrome Association (USA)

The Royal Children’s Hospital Melbourne 

The Royal Children’s Hospital offers a multi-disciplinary Paediatric Prader-Willi Syndrome Services. 

50 Flemington Road, Parkville Victoria, Australia 3052
Phone: (03) 9345 5522

Neurodevelopment and Disability 
Telephone +61 3 9345 5898

Specialist Clinics (for outpatient appointments)
Telephone +61 3 9345 6180
Facsimilie +61 3 9345 5034

Disability Continence Support Services
Telephone +61 3 9345 4102 
Facsimile + 61 3 9345 5871

Early Childhood Intervention Services
Telephone +61 3 9345  9438

Monash Children’s Hospital

The Monash Children’s Hospital offers Paediatric care to Prader-Willi Syndrome Patients

246 Clayton Rd, Clayton Victoria, Australia 3168
Phone: 13 KIDS (13 5437) or  (03) 8572 3000 (switchboard)

Prader-Willi Syndrome Research

Prader-Willi Research Foundation Australia 

 Foundation for Prader-Willi Research

Support and Advocacy services

Victorian Advocacy League for Individuals with Disability (VALID)

Association for Children with a Disability (ACD)

Carers Victoria

Rare Voices Australia

Genetic Support network Victoria

The Australian Parenting website

National Disability Insurance Scheme (NDIS)

National Disability Insurance Agency

NDIS Hotline
1800 800 110

PWS and NDIS Facebook Group
click here

Learn more about educating service providers with the Guides for successfully supporting people with PWS.

Counselling Support

PANDA National Helpline 
(Mon to Fri, 9am -7.30 pm), Call 1300 726 306 

Beyond Blue 
24/7 Support hotline, 
Call 1300 224 636 or online chat  3pm to 12 am 7 days a week                       

24/7 hotline, Call 13 11 14                                                                                     

Kids help line
24/7 support hotlilne 1800 551 800

Life Participation and Extracurricular and Social Activities

Access for All Ability play (AAA)

Special Olympics Australia

YMCA Victoria

Community Groups

There are numerous All ability and inclusive mainstream groups and clubs to join.  Local Government websites will often be able to provide contact details. Other groups will often advertise through school newsletters and community magazines.

Large organisations like scouts and guides are also an excellent opportunity for community inclusion.

NDIS opportunities, leisure activity providers amongst other listings in your area.

With the rollout of NDIS there are numerous service providers offering programs.

Many bigger and well-known service providers have offered Recreation and Leisure activities for many years.

  • Interaction
  • Scope
  • Yoralla
  • Gateways
  • GenU
  • Noah’s Ark
  • Leisure Networks
  • Lifeskills and
  • MacKillop Family services.

Also look for popular smaller regional and suburban service providers in your area.

Your NDIS plan can also include funding for Community access and a support worker can either take the child or adult out to enjoy the local area or to participate in activities within groups, clubs and gyms. NDIS can also assist a person to approach, speak to and join a desired group.