Support for Rare & Genetic Families

Three young boys sit and smile together on old, overgrown railroad tracks in a grassy area. The boy on the left wears a yellow shirt, the middle one wears a teal shirt, and the boy on the right wears a black tiger shirt.

Even when it feels like no one understands, you're not alone.

When your child has a rare or genetic condition, it can feel like you’re navigating unknown territory. Information isn’t always easy to find, and even professionals may have limited knowledge of your child’s diagnosis. Many parents say the hardest part is the isolation—feeling like no one else truly gets what you’re going through.

At Belongside Families, many of our staff and community are parents of children with rare and genetic conditions. We understand the challenges and the need for support that is practical and reliable. While all of our programs are relevant, we also offer dedicated webinars and parent stories that speak directly to the unique experience of raising a child with a rare or genetic condition.

What we offer

Rare & genetic families webinar series

Our four-part webinar series, delivered in partnership with Genetic Alliance Australia, brought together parent voices and professionals to make sense of genetic testing and the emotional and practical realities of raising a child with a rare or genetic condition. These short, practical sessions gave families useful information and the reassurance that others understand their journey.

Explore the series

Programs that can help

Every family’s journey is different—and so are the supports you might need along the way. We offer parent supports groups, one-on-one support, workshops and webinars, an online community, evidence-based parenting programs, and resources, all designed to be inclusive of rare and genetic families.

See all our programs

When you’re navigating the unknown, support from someone who understands can help you feel more confident and less alone.

What parents are saying

A woman smiling next to a young girl with long light brown hair, in front of a red and yellow building with gridded windows.

We were handed a photocopied pamphlet and told, ‘this is what your Daughter has’. No one in Australia had her rare genetic condition. There were no specialists and no support groups. I was so alone. But through Belongside Families I found my people. I found my tribe.

Parent

A smiling woman hugs a cheerful young boy with Down syndrome. The boy is wearing a shirt with colorful cars and trees, and both are looking happily at the camera in a bright indoor space.

Excellent session with knowledgeable great speakers - I learnt so much and loved that I could relate to lived experience of other genetic families.

Parent