ABC Tasmania shines a light on JIA service deficits
Tasmania is the only Australian state that does not have a specialist paediatric rheumatology team leaving families to travel to Melbourne or elsewhere for their child’s care.
JAFA Thanks ABC Tasmania and lead journalist, Liz Gwynne, for this important story about the lack of services for juvenile idiopathic arthritis (JIA) which is one of the most common chronic childhood conditions affecting Australian children.
The story supports JAFA’s 2023 proposal to the Tasmanian Government to establish a statewide paediatric rheumatology service. JAFA encourages affected families to contact their state MP to advocate for this much-needed service.
My JIA Booklet
IMPACT Study: Landmark Results Out Now
JAFA is proud to present the results of its landmark ‘IMPACT Study’ which detail the previously hidden physical, mental, emotional and financial burden of juvenile idiopathic arthritis (JIA) and childhood rheumatic diseases (CRDs) on affected 0-25yr olds and their families and carers.
The IMPACT Study was conducted in 2023 via a national survey and provides the first comprehensive analysis of the personal and financial costs of these diseases. This study represents another milestone in the history of JIA and related CRDs in Australia.
Research Symposium Video Up Now:
Held on November 30, JAFA’s 10th online symposium featured new and emerging evidence and insights from Australian research into juvenile arthritis and childhood rheumatic diseases. You can watch leading rheumatologists and researchers discussing the IMPACT Study results, a new focus on transitions services, the Australian Juvenile Arthritis Registry, and what’s in the research pipeline for JIA and CRDs.
JAFA Welcomes Oral Biologic
JAFA welcomes the announcement by the Minister for Health, The Hon Mark Butler that tofacitinib (Xeljanz) is now available on the Pharmaceutical Benefits Scheme (PBS) for children with arthritis.
This medication provides another option in the ‘toolbox’ for treating juvenile arthritis and is of historical importance as the first biologic medication to become available in Australia that can be taken orally rather than by injection or infusion.
Thank you Minister Park
JAFA thanks NSW Health Minister, the Hon Ryan Park, for launching the results of its landmark national IMPACT Study detailing the physical, mental, social and financial costs of juvenile idiopathic arthritis and related childhood rheumatic diseases for 0-25yr old Australians and their families.
Held in NSW Parliament House and co-hosted by JAFA and Dr Joe McGirr, MP for Wagga, the launch was a happy occasion enjoyed by the JAFA Board and guests, including MPs, JAFA friends, advisors and families including 18 beautiful children and young people.
Recruiting Now Australian Juvenile Arthritis Registry (AJAR)
Something you can do today to change your own or your child’s tomorrow! Launched in Parliament House in March 2023, AJAR is now open for 0-24yr olds with juvenile arthritis or other childhood rheumatic diseases. Registering with AJAR will help build a bank of information about how many children and young people have these diseases and if this changes over time. Knowing this will support planning for better services and research for better treatments.
Because the Juvenile Arthritis Foundation Australia thinks kids with arthritis deserve better.
It was founded in 2019 in response to the urgent need for a national voice dedicated exclusively to representing and addressing the needs of children and adolescents with arthritis and childhood rheumatic diseases.
JAFA is pleased to present its Annual Report which highlights major activities and achievements for 2022 and traces the ever-increasing momentum JAFA is building to improve political awareness, change health policy, and increase resourcing for juvenile arthritis and childhood rheumatic diseases in Australia.
Highlights of JAFA’s year included afternoon tea with the Prime Minister, tabling in the federal parliament of the report on the Parliamentary Inquiry into Childhood Rheumatic Diseases, and leveraging $22million in Medical Research Future Fund grants for childhood rheumatic and musculoskeletal diseases. The report concludes with a preview of JAFA’s newly articulated Strategic Priorities for 2023-2025.
Messages to Prime Minister Albanese from some kids with arthritis
When we recently had afternoon tea with the Prime Minister at the lodge in Canberra, we presented him with messages from some kids and young people with arthritis. They provided insights into living with these diseases, and they shared their thoughts on
What it’s like to have arthritis and What they would do for juvenile arthritis if they were Prime Minister.