Rare Disease Day 2026
World-Renowned Positive Exposure Founder Rick Guidotti to Headline Rare Disease Day 2026 in New Zealand
22q Foundation Australia & New Zealand to Host Landmark International Family Meeting in Auckland
The 22q Foundation Australia & New Zealand will celebrate Rare Disease Day 2026 in Aotearoa New Zealand with a landmark international event headlined by world-renowned photographer and human rights advocate Rick Guidotti, founder of the global movement Positive Exposure.
Held on Saturday 28 February 2026 at the Jet Park Hotel & Conference Centre, Auckland, the 22q Family Meeting will bring together families, clinicians, advocates, and community members from across New Zealand and around the world for a powerful day of visibility, connection, and global storytelling.
Titled “More Than You Can Imagine – The Power of Being Seen,” the event centres on Rick Guidotti’s internationally recognised work through Positive Exposure, a movement that has transformed how the world sees difference by redefining beauty, dignity, and identity for people living with genetic, physical, and intellectual differences.
Rick Guidotti’s work has been featured globally across healthcare systems, universities, governments, museums, medical institutions, and international advocacy platforms, using photography and storytelling to challenge stigma, dismantle stereotypes, and shift perceptions from diagnosis to humanity.
His Rare Disease Day keynote in Auckland will place visibility and identity at the centre of rare disease advocacy — creating a platform where families and individuals living with 22q and rare conditions are not just included, but seen, valued, and celebrated.
“This is not just a conference — it is a global moment of visibility,” said Maria Kamper, Founder of the 22q Foundation Australia & New Zealand. “Rick Guidotti’s work has changed how the world sees difference. Bringing him to New Zealand for Rare Disease Day creates an opportunity for families, clinicians, and communities to experience what it truly means to be seen with dignity, not defined by diagnosis.”
The meeting combines Rick Guidotti’s global advocacy vision with world-class clinical leadership and lived experience, creating a Rare Disease Day event that bridges medicine, humanity, identity, and community.
International & National Presenters Supporting the Event
Rick Guidotti – Founder of Positive Exposure (Keynote Speaker)
Dr Donna McDonald-McGinn – Children’s Hospital of Philadelphia, USA
Dr Honey Heussler – 22q Clinic, Brisbane, Australia
Dr Linda Campbell – 22q Minded, Global Psychological Clinic
Julie Wootton – Max Appeal, United Kingdom
Maria Kamper – 22q Foundation Australia & New Zealand
Lived Experience Voices
The event will also amplify lived experience, placing real voices at the centre of Rare Disease Day:
Charli Kamper – 22q Ambassador and person living with 22q
Lachlan Peck – Child living with 22q
Jessica Thorley – Sibling and caregiver
Susan Haldane – Lived experience advocate
The event is open to families, individuals living with rare disease, clinicians, educators, allied health professionals, researchers, and advocates, with a strong focus on whole-family inclusion and accessible community participation.
Event Details
Event: 22q Family Meeting – Rare Disease Day 2026
Theme: More Than You Can Imagine – The Power of Being Seen
Date: Saturday 28 February 2026
Time: 10:00am – 4:30pm
Venue: Jet Park Hotel & Conference Centre
Address: 63 Westney Road, Auckland