Support Groups
We have an on-line support group called Loosely Speaking. The purpose of this group is to help support each other, whether this be tips others have found useful, or people looking for doctors that others recommend. Our community is welcoming to everyone regardless of where you may be in your EDS/HSD journey, and are always there for support whenever you need it. Please feel free to join us.
Ehlers-Danlos Syndromes New Zealand also has regional support hubs who meet from time to time. These support hubs are run by volunteers from the nationwide Ehlers-Danlos community and are a great way to meet other members within the same region.
We have just started a new hub for our LGBTQIA ++ Community, please feel free to join if you feel this speaks to you.
A popular request has seen the creation of the Vascular Compression and Vascular EDS (and associated) Support Group which is now available to join.
We also have a youth hub available on discord EDSNZ GOATS Youth Discord for our 25 years old and under members.
Patient Stories
We understand that EDS/HSD can make you feel like you all alone, and while each person’s journey is an individual one, there is a common thread that ties us all together – EDS and our journey to diagnosis. Please feel free to read stories from other kiwi’s about their journey and life with EDS/HSD.
We’re on the look out for some people to contribute their health stories (journey to diagnosis and what has happened since) for our EDS NZ website. These stories will hopefully help other people in their own journeys to know they aren’t alone and that there are ways to get support in New Zealand.
If you would like to have your story on our Ehlers-Danlos Syndromes New Zealand website, please contact us.
Resources
We want to make life for everyone living with Ehlers-Danlos Syndrome easier. Our goal is to compile a full list of Resources that may help you access services available nationwide, as well as tips for daily life with EDS. This is a long-term goal for EDSNZ so please check back regularly as we work towards getting information compiled and uploaded.
Monthly Newsletters
These newsletters are a chance for us to share what is happening in our community nationwide, as well as update the community on what the EDSNZ committee have been working on. Please feel free to grab a cuppa and settle in for a read of previous editions.
Our monthly newsletters are automatically sent to EDSNZ member’s via email. If you would like to join our society for updates like this, please join for free.