Kaipara Zebras Support Group
A group for those with Hypermobile Syndromes Disorder (HSD)
Ehlers Danlos Syndrome (EDS) and those awaiting diagnosis and
their families
Email: kaiparazebs@gmail.com
Please join us for our next Coffee and Chat meeting.
We’re meeting at
Aqua (Hundertwasser Art Centre)
Saturday December 7th, 2024 @ 10am
We really hope to see you there.
EDSNZ Newly Diagnosed Seminar
The next seminar is Wednesday 19th February, 2025 9.30am
This seminar is aimed at the newly diagnosed (and whānau), or people still trying to negotiate the systems around them, and may help identify some tools you may not be using currently.
We will be holding these seminars every couple of months, and at different times, so if this time doesn’t work for you there will hopefully be another that will suit.
This is a free seminar run by EDS NZ and our Clinical Advisory Panel.
Facilitated by Jacquelyn Schirmer and Kelly McQuinlan (President of EDSNZ).
You are able to forward questions here
Other members of the Clinical Advisory Panel will forward answers and some will be present for the presentation.
If you feel this would be of help to you or whanau
Meeting link here
Slides of the presentation are available on the EDSNZ website
We run regular support groups for patients with HSD and EDS and their families and friends.
Jacquelyn chairs the EDS NZ Clinical Advisory Panel, has spoken on one of the ECHO practitioner international training sessions for the Ehlers-Danlos Society and attends international conferences and monthly clinicians’ meetings.
She has a role with EDS NZ to advocate on education for NZ practitioners on management and care for our patients with HSD and EDS.
Here are links to EDS charities in New Zealand, UK and the USA. All have different information and may suit different needs.
We’d like to thank Ehlers-Danlos Syndromes New Zealand for their support of our work.
We’re so glad to be working with you to get the word out to help patients and their families.
Here’s to a long, healthy collaborative relationship!