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Identifying unmet needs of Hunter rare disease community

Caring for someone with a rare disease can be intensely isolating and often results in financial and social disadvantage. This experience can be exacerbated for Hunter residents due to the limited availability of support services in the region.

nib foundation has partnered with the Association of Genetic Support of Australasia (AGSA) to help fund the Unmet Needs in the Rare Disease Community project that aims to provide greater support and information for carers of this unique group.

AGSA’s Director, Dianne Petrie said that people living with a rare disease require ongoing, specialist support from their carers.

“Rare diseases require multiple specialist appointments, expensive equipment and regular respite services, which places a lot of pressure on those living with or caring for a person with a rare disease,” Mrs Petrie said.

“Without adequate support services in their local communities, these carers are left to deal with these often difficult circumstances on their own resulting in feelings of isolation.”

The project will see seminars and workshops conducted throughout the Hunter to give carers and families of people with a rare disease the opportunity to provide their thoughts on current services, network with other carers and find out more information about services that are available.

nib foundation Chairman, Mr Keith Lynch, said the project’s results will help shape the future provision of services and support in the Hunter.

“By listening to the concerns of these carers and families we can identify appropriate solutions to help improve local support services and information,” Mr Lynch.

“The project also offers these dedicated carers an opportunity to meet other local carers leading to increased resilience and support networks,” he added.

The project’s announcement coincides with International Rare Disease Day (Thursday 28 February), which aims to raise awareness about rare diseases which affect more than one million people in Australia alone.

For more information about the project please visit

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