Resources

Our online support groups

If you have a child with a rare disease, join Rare Disease Kids Australia, our Facebook community support group.

If your child is in palliative care, join Rare Disease Pall Care, our Facebook palliative care support group.

If you are a bereaved parent to a rare disease angel, join Rare Disease Angels Australia, our Facebook bereavement support group.

Australia-wide

The Australian Government is addressing the problem with rare diseases.

Rare Care Centre is the first Clinical Centre of Expertise for Rare and Undiagnosed Diseases (Rare Care Centre) in Australia. The centres model focuses on cross-sector care for families.

Genetic Alliance Australia is a peak umbrella group for rare genetic diseases. Genetic Alliance provide a free genetic counselling service for families affected by rare diseases across Australia.

SWAN (Syndromes without a name) supports children with rare and undiagnosed diseases. They provide information, support and systemic advocacy for families caring for a child with an undiagnosed or rare genetic condition.

Rare Voices Australia is the peak body for Australians with rare diseases. Rare Voices Australia focuses on policy change for families in Australia.

The Steve Waugh Foundation provides support for children with rare diseases. The foundation focuses on ultra rare diseases for children, funding items not covered by the NDIS.

International 

Orphanet is a global resource for rare diseases, with a consortium of over 40 countries.

Rare Diseases International is a global alliance for all people living with rare diseases across all countries.

EURORDIS is the voice of rare diseases in Europe.

NORD is the national patient advocacy organisation for rare diseases in North Amercia.

CORD is Canada’s national network for organisations representing patients with rare diseases.

Centres of excellence

Agrenska in Sweden is the leading centre of excellence for rare diseases in the world.

In 2018, The Nathan Centre travelled to Sweden to visit Agrenska! We sought to learn from about the facility and its success story.