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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.
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Dragon Claw Newsletter September 2025
After 10 years as Dragon Claw, we've stepped into a new chapter and we’re excited to finally share the news with you.
Dragon Talks Retreat: A Weekend of Belonging
There are moments in life where you feel a sense of belonging, and this was one of them. From 6-8th February, members of our community came together for a special in-person retreat, A Weekend of Belonging, at the Mary MacKillop Retreat Centre on Central Coast NSW.
The Carer’s Support Corner
Caring for someone living with an autoimmune condition is a deeply human act — one that often happens quietly in the background of daily life. Whether you’re supporting a partner, family member, or friend, your role matters more than you may realise.
How does My Numbers Tool work?
After MyFlareUp's research project with Community and Patient Preference Research (CaPPRe) in 2024 found some alarming stats, we needed to explore why so many people in the autoimmune community today still continued to have severe symptoms, despite there being new treatment options available. We discovered that of the participants surveyed, 45% of them knew nothing about biologics and 56% of them knew nothing about JAKi’s, and 34% of participants were on the same medications and dosages over the past year, despite them reporting moderate to high disease burden. We also found that 52% of participants believed there were no further treatment options available to them, other than what they'd used before.
MyFlareUp launches new pain communication tool (MPaCT) at Parliament House
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.
MyFlareUp attends Women in Life Sciences 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.
