Introducing GHLF Australia — Australia’s newest patient-centred organisation that brings two decades of experience in patient advocacy, education and research.
Global Healthy Living Foundation Australia (GHLF Australia) might not seem like a familiar organisation to you – but you do know us.
We are the parent organisation of CreakyJoints Australia (CJA) and we form part of the international GHLF and CreakyJoints networks throughout the Americas – in English and Spanish. While CreakyJoints Australia will continue to nurture the arthritis community in Australia, GHLF Australia is expanding our reach to other chronic illness communities, first with related inflammatory conditions such as psoriasis and inflammatory bowel disease, as well as cancer, heart conditions and more.
Drawing on almost two decades of foundational knowledge, success and the reputation of GHLF and CreakyJoints, GHLF Australia aims to localise, mobilise and engage the Australian patient and caregiver community, and to provide education, advocacy and research for better health outcomes.
PATIENT SUPPORT AND VACCINATION INFORMATION
At the start of the Covid-19 pandemic, our US team saw a gap in quality information and support for people with chronic conditions, and so they stepped up and created the GHLF COVID-19 Patient Support Program.
This online program includes informational articles, mental health tips, patient essays and advice from autoimmune, infectious disease, public health and mental health experts to help people understand how to manage their medical conditions during the pandemic. The CJA team soon followed by regularly updating the Covid-19 education and resources on the CreakyJoints Australia website, paying attention to focus on immune-compromised patients, who make up the majority of our community.
GHLF Australia has drawn on all the patient support and vaccination education work done throughout our organisation and we have created new resources in these areas specifically for the Australian community. Our Australian website features:
- Personal stories from people with chronic conditions.
- Articles with tips on dealing with the challenges caused by the pandemic, vaccinations and lockdowns.
- Information about our advocacy activities and upcoming Patient Community Council.
We are especially proud to launch our #MatterofVax initiative as we believe vaccine education related to all preventable diseases is critical and urgently needed. Covid-19 makes this work a universal priority for patients, healthcare organisations and governments.
MatterofVax
Medically underserved and immune-compromised patients need easy-to-understand answers to their vaccine questions in formats that are accessible and readily shared with their families and community.
MatterofVax is an initiative developed by GHLF Australia and specifically for the Australian public. The initiative aims to address patient knowledge, concerns and confidence in all vaccinations, and thus ease the process for patients by providing accessible evidence-based information and ongoing support.
We are well aware that many of you are still struggling with difficult conversations with your patients about Covid-19 vaccinations and we believe our MatterofVax resources can help you in this area. Here are some resources you might like to share with them:
- Our Vaccination Facts video and short story series: This collection of short videos outlines the origins of inoculation, smallpox, polio and typhoid, and the greater issues of global immunisation. The first series celebrates the victories and sheds light on the importance of immunity to our future public health.
- Our MatterofVax podcast series: This first series explores the issues surrounding patients, caregivers and community on the topic of vaccination, Covid-19 risks and staying safe. We hear from the people walking the walk – patients, caregivers and community members – and get answers from medical experts.
- Our patient stories: Brigitte thought long and hard before deciding to be vaccinated for Covid-19 as she was worried it might trigger a relapse of her MS. David lives in a remote area and is physically active so he didn’t think he really needed to be vaccinated for Covid-19 until a cancer diagnosis forced him to realise the value of preventative health measures. Lily, aged 22, was diagnosed with meningococcal disease in 2017 on Christmas day. She narrowly survived. Like many Australian adults, she was not fully vaccinated against current strains of the vaccine-preventable disease and lives with the long-lasting consequences.
GET INVOLVED WITH GHLF AUSTRALIA
As part of our commitment to involve our community members at all levels, we invite you to share your ideas for future content topics or advocacy activities with us. We are keen to focus, in addition to time-sensitive materials related to vaccination, on the co-conditions that affect so many with inflammatory disease: psoriasis and IBD. These related conditions burden patients and doctors alike, and we want to help. You can stay in touch with us – and provide thoughts, comments or questions – by emailing us at info@ghlf.org.au
You can sign up as a GHLF member and join a nationwide community of like-minded people who are passionate about improving the healthcare system for those with chronic conditions.
We also invite you to Like, Follow and Share our @GHLFAustralia content on Facebook and Twitter.
Rosemary Ainley wrote this article on behalf of the GHLF Australia and the CreakyJoints Australia team.
We would like to thank Rheumatology Republic for this opportunity to share the patient voice within the Australian rheumatology community.
