Our main goal is to help create awareness in New Zealand of Ehlers Danlos Syndrome. Extremely important is connecting clinicians and patients together, and helping with research and understanding of the condition.
The majority of our members have the condition themselves, and are New Zealand wide, so we are hoping to spread our message with education, projects and fundraising.
We become a registered Charity under Ehlers-Danlos Society New Zealand Incorporated (CC55826) on 12/06/2018.
Our registration with the Societies New Zealand Incorporated (2704932) on 22/05/2018.
President / Co-Treasurer
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, and considers herself 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.
Lisa has worked in the non-profit sector for over 20 years – in education, Christian ministry and charitable organisations, both in New Zealand and the United States.
Her hEDS was not properly diagnosed until she was 44 years old, and Lisa is dedicated to increasing awareness and knowledge of Ehlers-Danlos Syndromes so that others receive an early diagnosis, proper care management and support.
Lisa lives in the sunny Eastern Bay of Plenty with her husband, Dr Matthew Preston, a radiologist with a special interest in EDS.
Steph qualified as a midwife in 2010 and is dedicated to ensuring New Zealanders receive the best health care possible.
She was diagnosed with EDS after a very challenging journey. As a result, she is driven to raise awareness of EDS and Hypermobile Spectrum Disorder (HSD), so that others are able to get diagnosed and supported in their journey.
Steph is a strong believer in patient advocacy, patients having their voices heard, and respect in their EDS care management.
Steph is passionate about building community and breaking down the isolation experienced by individuals as they find a way to live their best life with EDS. Together we are stronger!