Newsletter April 2026
MyFlareUp was honoured to launch My Pain Assessment Communication Tool (MPaCT) in partnership with Painaustralia at the Parliamentary Friends of Pain Management event on 10 March 2026 at Parliament House in Canberra, Australia. This event brought together patient leaders, clinicians, advocates and policymakers to discuss the future of pain communication in Australia – and the urgent need for reform.
The old “1-10 pain scale” was simply not adequate, and a new way of conveying the affects of chronic pain was needed – one that would put the patient’s voice at the forefront.
Led by MyFlareUp’s Dr Charmaine Jones MD (AOA), Retired Palliative Medicine, Director of Dragon Claw and Co-Facilitator of Dragon Talks, and in partnership with Canadian Chronic Pain Network other dedicated team members, an important new resource for pain communication was created – one that would challenge the old model.
Because pain is personal, and communication should be, too.
It took over 15 months of in-person and Zoom meetings in both Australia and Canada to complete the resource, but it was done. A powerful new patient-led tool was developed by patients for patients, with the aim of understanding the experiences of people living with chronic pain. If a patient’s treatment team could understand how pain affected them – the chances would be higher for them to get the treatment needed. Rather than focusing solely on intensity of pain, this tool would help people living with pain better communicate:
- the impact of pain on daily function, work, and relationships;
- what matters most to the patient;
- what the patient’s goals are for care;
- what support the patient feels they need to live well.
MyFlareUp’s chair, Alison Marshall, moderated a panel and interviewed two patients with lived-experience of chronic pain at the event. There was a panel clinician, Dr Romil Jain, founder and director of ACT Pain Centre who is also a qualified pain medicine physician and Interventional Pain Specialist, as well as Kim Allgood of Purple Bucket and Andrew Thirwell, MyFlareUp’s Lupus Patient Ambassador.
MyFlareUp’s Dr Charmaine Jones said the launch marked a significant shift toward genuine patient partnership in care. “My pain is not a number. Reducing pain to a score doesn’t capture what it takes from our lives – our work, our sleep, our relationships, our sense of self. MPaCT gives patients a structured, safe way to explain their pain in their own words and to identify what matters most to them. When patients can communicate impact and priorities, clinicians can partner with us more effectively. That is the foundation of truly shared decision-making.”
Monika Boogs, CEO Painaustralia, said launching the tool at Parliament House signals growing recognition that pain reform must be informed by lived experience. Painaustralia is the national peak advocacy group representing 3.7 million Australians living with chronic pain and works to ensure their lived experience and voice is part of the national conversation about addressing chronic pain.
“Chronic pain affects one in five Australians, yet too many people feel unheard or reduced
to a number. Tools like MPaCT strengthen shared decision-making and support more meaningful conversations between patients and health professionals. Launching this tool at Parliament House reinforces an important message; the patient voice must be central to policy, funding decisions and clinical reform.” said Ms Boogs.
MyFlareUp is a global patient-led community platform established for people living with autoimmune conditions. MyFlareUp hosts regular online expert talks via Dragon Talks, featuring guest speakers, and online and in-person member meetups where members can connect and share their experiences while learning important self-care practices.
MyFlareUp’s goal is to empower members through knowledge by bringing them closer to shared decision-making in their own treatment plans. While Dragon Claw has recently rebranded to MyFlareUp, the focus remains unchanged – to empower patients to not just survive chronic conditions, but to pursue remission, agency and informed partnerships in their health care.
Members of Parliament and attendees at the Parliamentary Friends of Pain Management event acknowledged the critical role of patient-led initiatives in shaping the future of pain care in Australia, as chronic pain remains one of the most complex and costly health challenges facing the nation today.
Newsletter April 2026
After 10 years as Dragon Claw, we’ve stepped into a new chapter and we’re excited to finally share the news with you.
Over time, we realised that while Dragon Claw carried meaning and history, it didn’t always clearly reflect who we are, or what we do. We are a community of volunteers living with, or caring for, someone with an autoimmune condition. Our focus is on connection, understanding, and support – sharing practical tools, lived experience, and education, through a holistic lens.
After 12 months of dedicated work behind the scenes by our volunteer team, we’re proud to finally introduce our new name – MyFlareUp.
At the heart of everything we do is wellbeing: helping people feel more equipped to navigate the daily challenges and unpredictable flares that come with having an autoimmune condition. As we’ve grown, it felt like the right time for a name that truly reflected our members’ experience.
We’ve learned that people living with autoimmune conditions – across more than 100 different diagnoses – share a common experience: flare-ups, often unpredictable and frequently triggered by stress.
Our new name reflects that shared reality and the day-to-day challenges that connect our community. It was however, important for us to honour where we began. With the help of our creative director, Phil Godsmark, our “cheeky dragon” was born – a small but meaningful symbol you’ll see across much of our content. It represents the quiet strength, resilience, and determination it takes to live with an autoimmune condition, while facing battles that aren’t always visible.
What isn’t changing is what matters most. We’ll continue to:
- host Dragon Talks inviting Expert Speakers,
- invite members to share valuable Member Stories,
- offer practical and supportive resources,
- host informative Events,
- advocate for people with autoimmune conditions,
- partner with organisations globally who share our goals.
This rebrand marks an evolution, not a change in our purpose. Our focus remains the same: to support, inform, and empower our members to move beyond simply managing their symptoms – to a sense of confidence in navigating life with an autoimmune condition, while helping them feel supported by being part of a community.
Same people. Same heart.
Newsletter April 2026
This March 2026 our Director, Gregory Holden, and Patient Advocate, Annette Heininger, represented MyFlareUp (a Dragon Claw Charity initiative) membership at the Women in Life Sciences Luncheon in Sydney, NSW.
The event was co-hosted by AusBiotech and Medicines Australia and brought together over 600 leaders, changemakers and allies to mark International Women’s Day, with its theme #Give to Gain.
Medicines Australia at Women in Life Sciences event March 26
The keynote speaker for the day, Dr Annalisa Jenkins, OBE, MBBS, FRCP, spoke of her experiences as a woman in leadership roles and the importance of the five ‘E’s of leadership: Envision, Engage, Empower, Enable and Execute. Dr Jenkins also spoke of the importance of being ‘lucky’, which she described as opportunity meeting preparation; a key lesson just as easily applied in patient advocacy to continue learning and being ready to take those opportunities to improve your health.
Special thanks given to our hosts for the event, AusBiotech CEO Rebekah Cassidy and Medicines Australia CEO Liz de Somer, for organising a spectacular day of learning and connection.
