SWAN Testimonials

What our members think

Without the support of SWAN, I think our family would have reached breaking point. Just knowing that we are not alone in our journey and having the support of the other families who understand what it is like to care for a SWAN child is a huge relief.

Emma Fortescue

We don't have the words to describe how much our SWAN community means to us. Finding out you have a child with different needs is really challenging, lonely, scary and isolating. Having a tribe around you who has been there, is there, or starting the journey alongside you is world-changing!

Having a child is an amazing and challenging experience. Having a child with additional needs and learning all the things that come with that is nothing like you think. We couldn't thank SWAN enough for being our piece in the puzzle of where we fit in the world and offering a place where we belong. And for connecting us with others and helping us through the trenches and getting in there with us and guiding us out. SWAN encourages us so we can be the best parents we can for our kids. SWAN is like our extended family that we choose.

SWAN's level of knowledge and professionalism is outstanding. SWAN can connect you with the right people and help you learn how to navigate a world that has no maps and no GPS. They do this while loving and standing with every one of us.

Amelia Abouzeid

When there was nowhere left to turn, with no diagnosis, and no doctor who understood, no support group for symptoms so complex, or a syndrome so rare, and worst of all, no treatment for pain so confusing, SWAN was there for us. The work SWAN does must not be understated. SWAN is there for all affected by rare disease and their families. The innovative ways that SWAN offer support is incredible and truly has made a profoundly positive impact on our lives. I remember the day I first came across SWAN, I had never spoken with another person who truly understood what our journey is like. It was incredibly validating to find others who truly do understand. We now have a whole army of understanding, knowledgeable and kind families, who we can share information and support with.

Trudy Hearne

SWAN has been vital to my journey as a rare and undiagnosed parent.  The care, support and kindness of Heather and everyone involved with SWAN has been life-changing for me personally.  To go from no one really understanding to having a national support network is amazing.  Not only do they support SWAN families at a grassroots level, but also lobbying for advancement and change in the wider rare diseases community.  I am forever indebted to this group's tireless work and support.

Jannine Lutton

I always look forward to SWAN events which give me the chance to catch up with other families dealing with rare or unknown diseases. SWAN is the only place I have found families with more than one child with a rare or unknown condition. It is also a great place to meet families with kids with complicated medical conditions. As my SWAN children get older I am realising a lot of organisations where I meet other families disappear or change when your child becomes an adult (hospital, school, VSK, Challenge). Most people I have met through schools have only one child and their needs are not very complicated. Through SWAN we have met families caring for more than one child with complex needs. It is reassuring to know we are not alone on our journey.

Jenny Downing

Providing information and support to families caring for a child with an undiagnosed or rare genetic condition.

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ABN: 60 997 279 388
ARBN: 646 034 880