Our Mission is to improve the wellbeing of those with Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders in Aotearoa New Zealand by raising awareness, improving knowledge by health professionals and providing support to patients.

Our Vision is to have an Aotearoa New Zealand where all people with Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders receive an early diagnosis, proper treatment, care and support.

Ehlers-Danlos Society New Zealand became an Incorporated Society (#2704932) in May 2018 and became a Registered Charity (CC55826) in June 2018.

We currently have 5 committee members and we meet monthly via Google Meet. If you’re interested in joining the EDSNZ Committee please contact us.

2025 Performance Report currently available to view here.

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Meet The Team

Kelly McQuinlan

Kelly McQuinlan

President


Kelly has Hypermobile EDS (hEDS)with vascular issues, and was only diagnosed at 25 years old after tireless effort.

Because of this, Kelly is motivated to help increase EDS awareness in our communities, and ensure other EDS patients receive the correct care and support to improve their wellbeing, and manage their lives better..

Kelly has always had a passion for medicine, a Citizen of Science, and is hoping to contribute to worldwide research on Ehlers-Danlos by coordinating research studies in New Zealand.

Kelly lives in Auckland with her husband and two young boys, one of whom has hEDS.

Read more about hEDS

Annabell Young

Annabell Young

Secretary & Youth Representative

Annabell has Hypermobile EDS (hEDS) and has navigated a challenging medical journey from a young age.

Annabell is a lived-experience advocate across both the mental health and disability sectors, and holds multiple advisory roles within non-profit and healthcare settings. She is committed to authentically representing disabled tangata whaiora, driving enduring change in New Zealand’s healthcare system, and supporting the holistic wellbeing of rangatahi with HSD and EDS in Aotearoa.

Annabell joined the EDSNZ Committee in 2024 as a Youth Representative and Committee Member, and is honoured to take on the Secretary role in 2026.

Annabell is based in Canterbury.

Constitution of The Ehlers-Danlos Society  New Zealand Incorporated