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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.
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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.
Dragon Claw launches new brand ‘My Flare Up’
After 10 years as Dragon Claw, we've stepped into a new chapter and we’re excited to finally share the news with you. 
