The Eurpoean League Against Rheumatism (EULAR) is the organisation which represents people with arthritis/rheumatism, health professionals and scientific societies of rheumatology of all the European nations.
In June this year, I had the honour of travelling to London to present a paper on 25 Years off Camp Freedom in the People with Arthritis/Rheumatism in Europe (PARE) section of the EULAR conference. Each year, approximately 14, 000 delegtates from over 100 countries attend EULAR, with 75 delegates representing Australia this year.
Camp Freedom is Arthritis & Osteoporosis WA’s camp for children with JIA and has now been running for over 25 years. I am very passionate about Camp Freedom and wanted to spread the word of the work that the Arthritis Foundation, our volunteer leaders and myself have done over those years, and the difference we are making in the children’s lives.
I spoke on the how, what, where and when of camp, and the benefits that the campers receive attending camp each year – with some attending up to 10 years! By the time this article is in print, we will have returned from this year’s camp, which will again be a huge success due to our dedicated team of volunteer leaders.
I also had the pleasure of meeting Simon Stones, the winner of this years’ Edgar Stene Prize for his essay titled “Living with rheumatic or muscloskeletal disease: How I take action to live life to the full”.
In his essay, Simon described his struggles living with a Rheumatic Musculoskeletal Disease (RMD) and taking medications since 3 years of age. He spoke about his will to succeed in his education, despite his illness and absences. Simon was an inspiring young speaker who is living life to the full with arthritis.
The information shared by the PARE presenters emphasised the need for person-centered initiatives that involve patients, carers, health professionals and industry as equal partners.
We also learnt how innovative technologies will become a growing part of the day-to-day management of our long term health conditions and communication with out healthcare teams.
I look forward to returning to EULAR in the not-too-distant future to hear some of the latest innovations from patient advocates from around the world.
By Kerry Mace, Camp Freedom Coordinator