SWAN’s mission has always been supporting and prioritising our families’ mental health and well-being through peer support. SWAN was established for peer support from other families caring for a child with an undiagnosed or rare genetic condition. Supporting SWAN families through programs such as the successful pilot peer support group leaders mentoring program SWAN facilitated ...
Syndromes Without A Name (SWAN) Australia
Peer support & information for families with undiagnosed or rare conditions

GOAL
$117,300
Field of Interest
- Health/wellbeing and medical research
- Individual/family services and support
Target Population
- People with a disability, illness or disease
- Young people (6-25)

SWAN Australia is a national organisation providing information, support, connection and advocacy to families caring for a child with an undiagnosed or rare genetic condition. We are a not-for-profit registered charity dedicated to providing practical and emotional support and information to SWAN families. We also raise awareness about the impact of undiagnosed and rare genetic conditions within the wider community.
Raising a child with unexplained physical, behavioural or cognitive challenges can be difficult. Parents can feel isolated, angry, confused, helpless, distressed. SWAN Australia is here to help. We work across three main areas:
Our peer support network is here to bring families together and share experiences. SWAN provides a critical social hub where parents and carers can mix with like-minded families, seek peer support and lend comfort and advice.
We also provide practical information to help families access health and support services and navigate the complex web of diagnostic testing pathways.
Our advocacy work gives SWAN families a voice. We raise the profile of SWAN children and put their needs on the public agenda. Areas we focus on include free access to genomic testing, increased genetic research and improved disability support services so that SWAN children can thrive.
Project Summary
SWAN’s mission has always been supporting and prioritising our families’ mental health and well-being through peer support. SWAN was established for peer support from other families caring for a child with an undiagnosed or rare genetic condition. Supporting SWAN families through programs such as the successful pilot peer support group leaders mentoring program SWAN facilitated last year continues to support carers’ mental health and wellbeing.
This project is addressed in three parts:
– Training volunteer peer support group and leaders
– Facilitate events for carers
– Supporting parents through genetic counselling services.
SWAN Cares supports families by providing them with avenues to connect for peer support and information sharing. SWAN will build on the successful pilot peer support leaders training program, facilitated in 2023, which supports SWAN parents’ mental health and wellbeing. The program matched SWAN parents with a local peer support group leader who could help them with disability and health information and regularly connected with them to ensure they received the support needed for their mental health and wellbeing. SWAN would facilitate volunteer Peer Support Group Leaders training over two days, with external first aid and mental health first aid training being undertaken on additional days.
The training includes:
– Peer Support
– Facilitation
– Carers and Support
– Gender Diversity and Pronouns
– Respectful Language and Communication
– Genetics/Genomics
– Bereavement
– NDIS
Leaders will be responsible for hosting peer support events for SWAN families in their geographical area. Employing a genetic counsellor will ensure families have access to a genetic counselling service without the long waiting times they experience through a public genetic service.
Project Outcomes
SWAN members make connections within the SWAN community within a 12-month period if they attend peer support events. Increased number of SWAN families connected for peer support and information sharing.
SWAN families have access to a genetic counsellor on a needs and case-by-case basis. Decreased demand on the health system as SWAN families utilise a SWAN genetic counsellor for support rather than waiting for an appointment with a genetic counsellor through a genetic service.
SWAN will measure the number of referrals from genetic services and direct referrals over a 12-month period. The long-term impact of SWAN Cares will be that more families can be supported appropriately by SWAN. This will decrease the demand on public and private health services for support, particularly with waiting lists to see a genetic counsellor. This will have an overarching positive impact on carers’ mental health and well-being and families get the support they require both social, emotional and with regards to information and knowledge about their child’s undiagnosed or rare genetic condition.
Budget Breakdown
TOTAL BUDGET: $117,300
FUNDING
Funding source | Amount |
---|---|
Funding gap (unconfirmed) | $117,300 |
EXPENSES
Expense item | Amount |
---|---|
Project management and evaluation of Peer Support Leaders program | $3,000 |
Adminstration | $17,000 |
Peer Support Events | $48,000 |
Genetic Counselling | $49,000 |
Support Syndromes Without A Name (SWAN) Australia
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