About Us

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.

Presidents Annual Report 2019

We currently have 8 committee members and we meet monthly via Zoom.

2021 Performance Report currently available to view here.

our 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.

Jennifer

Jennifer Nielsen

Secretary

Jennifer has Hypermobile EDS (hEDS) and was diagnosed at 28 years old after begging for a referral  to an orthopaedic surgeon after a shoulder and knee dislocation, and other ongoing issues that were not improved by physiotherapy.

As a result of this diagnosis, and a life-long history of health struggles, Jennifer has a passion for supporting people with health challenges to receive better treatment in our medical system, and live the best life they can.

Jennifer is also a qualified counsellor with an interest in advocacy and crisis management. Using her knowledge and experience, she hopes to support the EDS community with the impacts of mental health, and improve their wellbeing.

Jennifer lives in Whākātane in the Bay of Plenty where she was born and raised.

Read more about hEDS.

Tara Apperley

Tara Apperley

Treasurer

Tara has Classical EDS (cEDS) and despite an initial diagnosis of Classic/Hypermobile crossover type at 17, was not aware of how the condition could affect her until her severely declining health led her to a full understanding and receiving a re-diagnosis at 31.

Because of this, Tara is committed to helping others in the Ehlers-Danlos community to have access to easy-to-understand information about EDS as well as have a support network as they come to terms with their diagnosis.

Tara has a passion for medical history, particularly where it intersects with Ehlers-Danlos Syndrome and it’s co-morbidities.

Tara lives in the Wairarapa with her family.

Read more about cEDS.