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.

Social Support Resources

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.

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.

Home Help

If you’re having ongoing health problems, an injury or a disability, you may be entitled to receive some help around the home with housework, food prep, or even just getting ready for the day. Read more here about how Home Help works and how it may help you.

Accessing Home Care Equipment

If you need help with basic tasks, get a referral to an occupational therapist to be assessed for home care equipment. Read on for more information about Occupational Therapists, how they may be to help you, and how you can access mobility aids even without an OT.

Medical Support Resources

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.

EDSNZ Health Passport PDF

EDSNZ has created an easy-to-read Health Passport for download. Print it off and fill in the relevant details about how EDS affects you so you can easily carry it on you when you see medical professionals and specialists. It also includes a brief “What is EDS?” section you can share with your health team.

Create A Care Team

Creating a care team to help you with all the various parts of your condition can be very overwhelming. We’ve created this small guide to help you start building your care team whether they are doctors, physiotherapists or mental health professionals.

Medic Alert Service

Adverse drug reactions and misdiagnosis are a serious risk during a medical emergency. Identifying your risks with Medic Alert Services give emergency responders confidence to act promptly to protect and save your life. Find out more about how Medic Alert Service may help you.

Mankoski Pain Scale

The Mankoski Pain Scale is a numerical scale ranging from zero to 10. The Mankoski scale is a tool that helps clinicians better understand an individual’s pain intensity, helping to ensure their pain is adequately addressed and managed.

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.

What Is EDS Printable Pamphlet

An easy-to-print pamphlet about EDS and HSD that you can share with medical professionals as well as friends and family.

Living With EDS/HSD Resources

EDS Echo Patient Sessions – Hypermobility 101

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.

Gentle Exercises with Jeannie Di Bon

Jeannie Di Bon is an internationally recognised Movement Therapist specialising in Hypermobility, Ehlers-Danlos Syndrome and Chronic Pain.

Check out the gentle exercises series created for May Awareness Month 2023 here.

Travel Support

While EDS can have an affect on traveling, we have put together this guide of mobility supports you may be entitled to, financial aid services and support services that can help pay for traveling to medical appointments, and some few tips for traveling from our Loosely Speaking support group.


Goblin.Tools is an AI program designed to assist individuals with daily tasks. Originally developed for a younger audience, this platform is equipped with an array of beneficial features. Users can generate comprehensive to-do lists with step-by-step breakdowns, effortlessly locate recipes utilising available ingredients, and customise searches based on dietary preferences, time constraints, serving sizes, and more. Additionally, the program offers the capability to enhance the professionalism of text and assess tone. Best of all, Goblin.Tools is accessible free of charge and can be utilities both as a website and as an app.


Grocer is a grocery price comparison app designed for New Zealanders. With this user-friendly platform, you have the ability to input your preferred local supermarkets, generate your own grocery list, and promptly obtain a comprehensive price analysis. This convenient resource empowers you to easily identify the most cost-effective options, ensuring you achieve the best value for your purchases. Moreover, Grocer is completely free to use, and offers the added convenience of real-time price comparisons, allowing you to add items to your list while shopping and promptly receive instant pricing insights. Available on both website and apps for Android and Apple.

Presentation: Nutrition Care For EDS.

Presented by Lorna Ryan rNTP & Leigh O’Brien RD, here you will find the full video presentation of the Nutrition Care Call held during May Awareness Month 2024. There is also a full PDF slide of the presentation available.