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 6 committee members and we meet monthly via Google Meet. If you’re interested in joining the EDSNZ Committee please contact us.
Meet The Team
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
Grace Blackett
Secretary
Grace has Classic EDS (cEDS) and was diagnosed at in her early twenties.
Grace has been part of the wider EDSNZ team working within the Greater Wellington Regional Hubs support groups, which has included organising in person meet ups, but officially joined the EDSNZ Committee in 2024.
Grace has worked in the non-profit and disability sector her whole life, and has recently returned to study to gain her Bachelor's in Occupational Therapy. For downtime, Grace enjoys being out in nature, swimming in the ocean, and being with her dogs.
Grace lives in Wellington.
Read more about cEDS
Constitution of The Ehlers-Danlos Society New Zealand Incorporated – pending review at 2024 AGM.