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New Website Launched to Support Kids with Juvenile Arthritis

The website was made possible by a $35,000 grant from the Foundation.

Friday, 17 November, 2017

A new website has been launched to support more than 6,000 children across NSW affected by juvenile arthritis and other rheumatic diseases.

The website is an initiative of Arthritis NSW in conjunction with the Sydney Children’s Hospitals Network, John Hunter Children’s Hospital and the Agency for Clinical Innovation and was made possible by a $35,000 grant from Newcastle Permanent Charitable Foundation.

Juvenile arthritis is a painful, debilitating condition. Early diagnosis and treatment is essential to preventing irreversible damage to young bodies. The Paediatric Rheumatology Network website was developed to deliver important resources to further support young patients and their families in regional and rural NSW. The website is designed to provide patients and families with accurate up to date information about their child’s illness, as well as a place for them to hear other families’ stories.  

Newcastle Permanent Charitable Foundation Chair Phil Neat said easy access to quality health information was extremely important for regional families facing serious health issues like juvenile arthritis.

“A lack of readily available information compounds the sense of isolation felt by people already dealing with difficulty accessing medical specialists in regional and rural areas,” Mr Neat said.

“The Foundation appreciates the work of Arthritis NSW, Sydney Children’s Hospitals Network and John Hunter Children’s Hospital in ensuring families and clinicians in regional NSW have access to quality information and support.”

A mother with her daughter, who suffers from juvenile arthritis
Alicia Thornton with her daughter Georgia, who has juvenile arthritis.

"Juvenile arthritis may have a debilitating effect on the young person diagnosed."

Department Head of Rheumatology at the Sydney Children’s Hospitals Network Dr Jeffrey Chaitow

Dr Jeffrey Chaitow, Department Head of Rheumatology at the Sydney Children’s Hospitals Network, said the Paediatric Rheumatology Network website aimed to create an online network of support for patients and families, as well as the medical teams that care for them, regardless of where they live and practice in NSW.
“Juvenile arthritis may have a debilitating effect on the young person diagnosed and as a result, this chronic illness also commonly affects the lives of carers and family responsible for looking after children with this condition. Fortunately though, with modern day multidisciplinary therapy, we aim to keep these patients functioning as normal children and adolescents,” Dr Chaitow said.

This website will compliment that, enabling access to information and resources regardless of a family’s geographic location.”

Arthritis NSW is the peak body in the State for people living with arthritis and other musculoskeletal conditions. Arthritis NSW helps children and young people with juvenile arthritis, with a focus on developing the self-management skills that will enable them to enjoy full and active lives. The organisation’s two annual camps provide an opportunity for young people to participate in fun and educational activities without fear of being different and help them regain a sense of social inclusion and normality in their lives.

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