Prader-Willi Syndrome Association of Victoria

What Prader-Willi Syndrome Association of Victoria does

The Prader-Willi Syndrome Association of Victoria Inc. (PWSA Victoria) is a volunteer-led, ACNC-registered Australian charity founded in 1979 and headquartered in Kew, Victoria. It supports individuals affected by Prader-Willi Syndrome (PWS), a rare genetic condition, and their families through a portfolio of services including a telephone Support Line, the annual Time Out Camp family retreat, monthly PWS Connect Days, tailored in-service training for educators, medical and allied health professionals, disability providers, and employers, and the Empowered Voices Mentor Program for adults with PWS aged 16 and older. The organization also produces an extensive content and resource library — the Beyond the Diagnosis Series, First Response Kit, Australian Medical Alert Booklet, and topical booklets on growth hormone, medical care, intervention therapies, prescribed medication, and supplements — and runs two annual campaigns, the global Go Orange awareness initiative in May and the 15 for 15 Challenge fundraiser tied to chromosome 15.

The underlying technology stack is minimal: the organization explicitly does not develop technology products, and its digital footprint consists of a content website, social media channels, an online merchandise shop, and downloadable PDFs. Its core "platform" is a 45-year community of volunteers with lived experience of PWS, augmented by formal research and clinical partnerships with Monash University, the Royal Children's Hospital, Monash Children's Hospital, Monash Partners Academic Health Science Centre, Victoria University, the Florey Neuroscience Institute, and the University of Cambridge.

Revenue is generated through four primary streams: tax-deductible donations and fundraising campaigns (DGR status since 1 July 2000), recurring membership subscriptions, merchandise sales, and event registration fees (Time Out Camp priced at AUD 150 per person, capped at AUD 600 per family for 2026). Go-to-market is community-led and event-driven, anchored by flagship events such as Time Out Camp, the 15 for 15 Challenge, Go Orange Awareness Month, PWS Connect Days, and the annual Sally Smith Award. In 2020/2021 the organization reached an estimated 31% of PWS-affected families in Victoria, supported 86 people through its Support Line, delivered training to 16 organizations, and reached 36,000 people via social media.

Name

Prader-Willi Syndrome Association of Victoria

Legal name

Prader-Willi Syndrome Association of Victoria Inc.

Website

https://pwsavic.org.au

Company type

Private

Founded year

1979

Operating status

Operating

Headcount range

1–10 employees

Short description

The Prader-Willi Syndrome Association of Victoria is a volunteer-led Australian charity founded in 1979 that provides support, education, advocacy, and awareness services to individuals with Prader-Willi Syndrome and their families across Victoria and Australia.

Ownership category

akta.pro rank

Product category

Rare Disease Support Services

NAICS

Individual and Family Services (6241), Voluntary Health Organizations (813212), Other Individual and Family Services (624190)

SIC

Services-Social Services (8300), Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

Chronic Disease & Health Promotion Program Funding (HLAJALAJ)

akta.pro secondary industries

Maternal, Child & Family Health Program Funding (HLAJALAG), Public Health Financing, Budgeting & Grants Management (HLAJAMAC)

Keywords

• Disability support services
• Rare disease advocacy
• Community awareness campaigns
• Family support programs
• Nonprofit charity services

Headquarters

HQ city

Melbourne/Kew

HQ country

Australia

HQ region

Oceania

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others, Infrastructure

Revenue model

1. Donations and Fundraising: The organization raises funds through general donations, annual fundraising campaigns such as the 15 for 15 Challenge, and merchandise sales. Donations are tax-deductible due to their Deductible Gift Recipient (DGR) status.
2. Membership Fees: Annual membership provides access to quarterly newsletters, event notifications, and community connection opportunities.
3. Merchandise Sales: Sale of awareness merchandise including orange-themed products through their online shop.
4. Event Registration Fees: Time Out Camp charges registration fees ($150 per person, capped at $600 per family for 2026).

Pricing tiers

Go-to-market motion2 records

Distribution channels4 records

Marketing channels10 records

Core offering

PWSA Victoria is a volunteer-led non-profit charity providing support, education, advocacy, and awareness services for individuals and families affected by Prader-Willi Syndrome in Victoria, Australia. Its core offerings include the annual Time Out Camp family retreat, PWS Connect Days community gatherings, in-service training programs for professionals, the Empowered Voices Mentor Program for adults with PWS, a Support Line, and a library of educational resources including the Beyond the Diagnosis Series, First Response Kit, and Australian Medical Alert Booklet. Funding comes from tax-deductible donations, memberships, event registrations, and grants.

Product overview

The Prader-Willi Syndrome Association of Victoria (PWSA Victoria) is a volunteer-led registered Australian charity providing support, education, advocacy, and awareness services for individuals and families affected by Prader-Willi Syndrome. The organization operates a suite of core services including the annual Time Out Camp (family retreat), PWS Connect Days (community gatherings), PWSA Victoria Training Programs (education for professionals and families), and the Empowered Voices Mentor Program. PWSA Victoria also produces educational resources including the Beyond the Diagnosis Series Resource Kit, First Response Kit, Australian Medical Alert Booklet, and general Booklets and Brochures covering medical care, therapies, and supplements. The organization runs annual awareness campaigns including the Go Orange Campaign (May awareness month) and the 15 for 15 Challenge (fundraising campaign). Additional services include a support line, membership program, volunteer opportunities, and the Sally Smith Award recognition program.

Differentiator

Problem solved

Functional benefit

Brands

• Time Out Camp: Annual family camp for Australians living with PWS, providing support and activities for entire families
• 15 for 15 Challenge
• Go Orange
• Empowered Voices
• Beyond the Diagnosis Series
• PWS First Response Kit

Products and services

• Time Out Camp Annual family retreat for Australians living with Prader-Willi Syndrome and their families. Held at camp facilities, the camp provides peer support, friendship, activities, education programs, and respite care in a safe PWS-friendly environment. Open to families across Australia, with registration fees of $150 per person capped at $600 per family for 2026.
• PWSA Victoria Training Programs Tailored training and education programs for families, Disability Support Providers, Employers, Supervisors, Educators, Medical and Allied Health Professionals on Prader-Willi Syndrome care and support. Delivered as in-service training to organisations across Victoria and Australia.
• PWS Connect Days Monthly community gatherings at various Melbourne locations providing peer support opportunities for PWS families to connect with others facing similar challenges and build ongoing community networks.
• Empowered Voices Mentor Program Mentor program pairing adults with PWS (16+ years) with trusted carers, providing structured opportunities for adult PWS community members to support younger peers, build self-esteem, and develop purpose.
• Support Line Telephone support line at 0451 797 284 providing assistance, information, and referral services to families and individuals affected by Prader-Willi Syndrome across Australia.
• Beyond the Diagnosis Series Resource Kit Comprehensive set of information booklets that grow with the child, providing guidance for parents and carers navigating the PWS journey from diagnosis through all stages of development. Funded by Rotary Club of Box Hill Central and Blackburn South Community Bank Branch of Bendigo Bank.
• First Response Kit Information resource for people with PWS, their families, disability providers, and advocates providing essential guidance and support information for crisis situations and daily care.
• Australian Medical Alert Booklet Booklet containing vital information regarding medical complications that can arise in patients with Prader-Willi Syndrome, designed for use by emergency and medical personnel.
• Annual Membership Annual membership providing access to quarterly newsletters, event notifications, and community connection opportunities for parents, carers, and individuals affected by Prader-Willi Syndrome.

Quantifiable outcome

• Helped 31% of families estimated to be living with PWS in Victoria (2020/2021)
• +4 more outcomes

Named customers5 records

Segments8 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

13 partnerships are on record, tiered core and supporting.

• Monash University (Department of Paediatrics)coreStrategic or Co-development PartnerLead research partner for the state-wide evidence-based model of care for children with Prader-Willi Syndrome. Professor Katrina Williams leads the project in collaboration with Associate Professor Tom Connell from The Royal Children's Hospital.
• The Royal Children's HospitalcoreStrategic or Co-development PartnerClinical partner in developing the state-wide care model for children with PWS. Working with Monash Children's Hospital to implement evidence-based care standards.
• Monash Children's HospitalcoreStrategic or Co-development PartnerClinical partner implementing the state-wide evidence-based model of care for children with PWS alongside The Royal Children's Hospital.
• Monash Partners Academic Health Science CentrecoreStrategic or Co-development PartnerPartnership supporting the state-wide care plan by working with all stakeholders including children, families, carers and clinicians to identify and prioritize elements of best care.
• Rotary Club of Box Hill CentralsupportingOthersProvided funding for the Beyond the Diagnosis series of information booklets for the PWS community. Part of Community Grants Programme.
• Blackburn South Community Bank Branch of Bendigo BanksupportingOthersProvided funding for the Beyond the Diagnosis sibling support booklets. Joint funding with Rotary Club of Box Hill Central.
• Good360supportingOthersHelped Santa with gifts at Christmas time for PWS families. Organization that sources quality donated products for those in need.
• Little DreamerssupportingStrategic or Co-development PartnerOrganization supporting young carers aged 4-25 who provide care for family members affected by disability. Partnering with PWSA Victoria to support siblings at Time Out Camp.
• Victoria UniversitysupportingStrategic or Co-development PartnerResearch partner for Caralluma Fimbriata extract (CFE) clinical trials for appetite control in PWS. Dr Joanne Griggs conducts research at Victoria University.
• Florey Neuroscience InstitutesupportingStrategic or Co-development PartnerResearch partner for PWS appetite research alongside Victoria University. Collaborative research on Caralluma Fimbriata extract.
• University of CambridgesupportingStrategic or Co-development PartnerResearch partner hosting Dr. Giles Yeo's team for PWS appetite control research. Using single-cell sequencing technology to map hypothalamic differences in PWS.
• Autism BrainNetsupportingOthersProvided hypothalamic tissue samples from individuals who lived with PWS for research purposes. Critical resource for understanding PWS brain function.
• Prader-Willi Syndrome AustraliasupportingGTM or Marketing PartnerNational organization with whom PWSA Victoria collaborates on mutually beneficial projects. PWSA Victoria withdrew from amalgamation pursuit in 2020 to remain independent.

Scale indicators7 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Very Special Kids: Victorian-based pediatric palliative and disability support charity providing family respite, training, and peer support. Closely comparable in volunteer-led structure, state service footprint, and family-services mandate.
• International Prader-Willi Syndrome Organisation (IPWSO): Global umbrella body representing PWS associations across more than 40 countries. Comparable in mission and constituency, with scale and reach significantly beyond PWSA Victoria.
• Down Syndrome Victoria: Victorian state-based disability advocacy and support organization delivering family services, training, and resources to a defined disability community. Closely comparable in operating model, geography, and service mix.
• Prader-Willi Syndrome Association UK: U.K.-based PWS support organization providing information, family support, and advocacy for the PWS community. Comparable in mission and volunteer-driven service model to PWSA Victoria.
• Prader-Willi Syndrome Association (USA): National U.S. PWS advocacy and support organization. Operates a virtually identical model of family support, education, advocacy, and resources for individuals with Prader-Willi Syndrome, making it the most direct comparable peer.
• Prader-Willi Syndrome Australia (PWSA Australia): National Australian PWS organization with which PWSA Victoria collaborates and explored amalgamation in 2020. Direct peer in geography and disease focus, with broader national scope.

Broad incumbents

• Autism Spectrum Australia (Aspect): Large Australian autism advocacy, service, and education provider. Comparable as a disability-focused community organization delivering training, family support, and resource development, though at significantly greater scale.
• Rare Voices Australia: Australian peak body for people living with rare diseases. Comparable as a national advocacy and policy organization serving similar rare-disease communities, though broader in scope than PWS alone.

Emerging players

• Foundation for Prader-Willi Research (FPWR): U.S.-based research funder focused on PWS therapeutics, including the $161,947 grant funding Dr. Giles Yeo's hypothalamic research. A peer in the PWS ecosystem with a research rather than direct-service focus.
• Genetic Alliance Australia: Australian organization supporting individuals and families affected by genetic conditions. Comparable in delivering family support, information resources, and advocacy for a defined patient community, with broader genetic-disease remit.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/pwsavic
• Facebookfacebook.com/pws.asn.au
• LinkedInlinkedin.com/company/prader-willi-syndrome-association-of-victoria

Compliance3 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles9 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Prader-Willi Syndrome Association of Victoria