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.

Mental Health Support

Having EDS can take its toll on your mental health, and it’s normal to grieve after a life changing diagnosis. While we here at Ehlers-Danlos Syndromes New Zealand are here to help, we also have a list mental health resources that are available to you.

Financial Support

Living with a chronic condition like EDS, where every day can be different to the one before, it can be hard to continue working and maintain your physical health. Here we have a list of financial services that you may be entitled to.

Travel Support and Tips

While EDS can have an affect on traveling, we have put together this guide of mobility supports you may be entitled to as well as some handy tips and tricks to make traveling easier on yourself.

ACC Support

We know that some of our community feel apprehensive about accessing ACC following an injury. We have been in contact with ACC to have the process explained further and give some clarity around what they do.

Knowing Your Rights

You may have seen the Know Your Rights posters at your medical providers offices, but what specifically are your rights? We breakdown what your rights are and what that means for you when accessing medical care here.

Making The Most Of Your Doctors Appointments

We’ve compiled some tips to getting the most out of your doctors appointments including information on how to talk to a new doctor.

Virtual Health Consultation Apps

Health Navigator New Zealand has put together these incredibly handy list of apps which enable you to have an appointment with a New Zealand registered health practitioner without seeing them in person. These health practitioners operate via video calls, text messaging, emailing or phone calls.

Vascular EDS Package

If you’ve or someone you know has been diagnosed with Vascular EDS, we have created a package for you to get started on creating a care team, creating an emergency file and tips for living with Vascular EDS.

EDS Echo Patient Sessions

Video sessions with Dr. Leslie Russek, PT, DPT, PHD, OCS. Each session touches on aspects of living with EDS/HSD including POTs and Mast Cell, with a Q&A session with questions from the NZ EDS/HSD Community. Downloadable PDF’s of each session are also available.