Celebrating Rare Disease Day 2025: A Movement for Change

On 28 February, our team at Child UnLimited was privileged to attend the RareNSW Rare Disease Day, a compelling event that transcended the ordinary—it was a vivid display of the resilience, strength, and determination of families affected by rare diseases. As Rick Guidotti put it, the room was truly filled with "beautiful and amazing people."

We extend our heartfelt thanks to Elizabeth Emma Palmer and the Rare Diseases NSW team, whose leadership has not only recognised young people and families but also engaged them actively in shaping research, healthcare policies, and support systems. Their advocacy efforts are leaving a tangible impact on countless lives.

We also celebrate the extraordinary contributions of Michelle Farrar, Ursula Sansom-Daly, Dr. Eden Robertson, Jodie Ingles, Iva Strnadová, Natalie Taylor, Dr. Lisa Evans, and Laurayates, who are at the forefront of research and clinical care. Their unwavering commitment to listening, collaborating, and advocating alongside families is transforming the way rare diseases are addressed—resulting in improved treatments, earlier diagnoses, and a more inclusive healthcare system.

This community is built on the powerful voices of families who transform personal challenges into widespread advocacy and action. The heartfelt words of Giovi Moschoudis resonated deeply with all of us, and many others shared their stories with honesty and bravery, ensuring that no family navigates this path alone.

Additionally, Maria Kamper and Charlie from the 22q11 Foundation Australia * New Zealand showcased their formidable, fearless advocacy, reminding us all why our work is so crucial.

As we conclude this impactful Rare Disease Day 2025, we are grateful for the support from the Sydney Children's Hospitals Network, Luminesce Alliance, and all our amazing supporters who made these two days so meaningful.

At Child UnLimited, we recognise that we are more than just a collection of voices—we are a collective movement for change. Fueled by families, researchers, clinicians, and advocates, we are committed to ensuring that rare diseases do not remain in the shadows.

This is just the beginning. Watch this space. 💜💪

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