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


Friday 5th July – 10am

Koatare Cafe 

 (Next to Mangawhai Museum)

191 Molesworth Drive,
Mangawhai Heads 

 

 

EDSNZ Newly Diagnosed Seminar

The next seminar is Monday 23rd September at 12pm

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.

EDS NEW ZEALAND

EDS UK

EDS USA

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!