May 2024 Newsletter

Kia ora koutou and Welcome to EDS/HSD Awareness month

See whats planned for May awareness month this year!

This issue:
Support calls
How you can help
Awareness campaign
Pre orders –  OPEN NOW

Rewardhub –  shop normally and earn donations for us!

Please note –  we will be sending weekly emails throughout the month of may, but this will return to normal after our awareness month.


Join us this may in raising awareness of Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders. Participate in events and share your story with friends and family. For more information on how you can participate check out

Ehlers-Danlos Syndromes New Zealand works to help those in need in our communities and change their lives for the better. We rely heavily on community support, and a large portion of this is from fundraising events and activities involving dedicated people like you. The possibilities are limited only by your imagination so get creative, go over the top and let everyone know that you stand for something!

Any money raised will go towards the development and production of a book to help guide people through diagnosis and managing HSD & EDS

Walk, Run, Swim, Ride or Roll
 to fundraise money for EDS Awareness Month!

Work with your Friends, Family, Workplace, or even solo! It’s a great way to bond and/or work towards a common goal!

This is your chance to let your friends and family know how EDS/HSD affects you personally and raise both awareness of EDS/HSD in NZ as well as funds to help Ehlers-Danlos Syndromes New Zealand continue it’s mission of getting a better understanding, and ultimately treatment, of EDS/HSD. Use a tracker device such as Apple Watch, Fitbit or Strava to record how far you have walked, swim, biked, or travelled on wheels (wheelchair or car, your choice!) and add it to your personal profile every day to add to the challenge total!

2022, as a collective, we moved 716km! Thats Cape Reinga to just south of Taupo
2023, we had 18 individual participants, 6 teams, $2,471.00 raised, 2,091 km travelled.
Lets smash this, this year!

How many times can we stretch the distance of the cook strait?

  Register your distance daily and see how far you can go!

Join the challenge here.

Use the hashtags #EDSNZMay2024 and #EDSNZdistancechallenge2024 when sharing on social media.

Register your Awareness month event!

Register your fundraising event with us and we can share your event in our weekly mail blasts!

We can help connect you with the correct information from The Ehlers-Danlos Society to help and guide your way to a successful fundraiser!

You can jump on this link for some great fundraising! ideas.

This May hit the books to raise awareness of EDS in NZ, and raise funds for EDSNZ so we can continue our mission of supporting all kiwis with EDS in NZ!

Join here.
Use the hashtags #EDSNZMay2024 and #EDSNZreadathon2024 when sharing on social media.

Join us for our virtual quiz night Friday 31st of May 2024
Theme –  Kiwiana!

Kicking off at 7pm, our Virtual Quiz Night is happening this May! Participate as an individual, or gather a team at home to participate together, and join in for a night of community and fun and a chance to win some fantastic spot prizes!

The best bit, all proceeds from ticket sales in the form of a koha go towards the creation of our EDSNZ Booklet in conjunction with our amazing Clinical Advisory Panel. This will help the newly diagnosed navigate their diagnosis and the NZ Health System.

Use the hashtags #EDSNZMay2024 and #EDSNZquiznight2024 when sharing on social media. Book your spot from May 1st here.

Creative Competition!

We love our entries so much last year that we’re doing it again!
This year will Zebra themed. Clay, paint, knit, cross stitch, crayons, anything creative we’ll accept it as an entry!

We do ask that all creations were made within awareness month, or with awareness in mind.

Two categories to enter – Youth and Adult

Entries close 26th May at 5pm –  Winners announced 30th May.

Prizes to be announced shortly.

Spread some awareness within your school, church group or sports club! Create a coin trail, a parkour course, a zebra themed mufti day, the choice is yours!

We can help coach you through what you may need to do, so get in touch today at

Our Mission is to improve the wellbeing of those with Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders in Aotearoa New Zealand by raising awareness, improving knowledge by health professionals and providing support to patients.

Our Vision is to have an Aotearoa New Zealand where all people with Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders receive an early diagnosis, proper treatment, care and support.

We are a volunteer, not for profit organisation and rely 100% on community donations to help us with our efforts. $2, $5, $10 –  anything helps!

How you can helpAnchor

Click the “donate now” picture above to donate.

Share the posts from our EDS NZ Facebook page to your social media.

Encourage loved ones and work places to get involved in our HSD & EDS awareness month challenges.

Raise awarenessAnchor

This May share how EDS/HSD affects you by joining our Social Media Challenge.

Participate on Facebook, Instagram, or TikTok, by posting images or video’s based on daily prompts.

Share with everyone using the hashtags #EDSNZMay2024 and #EDSNZSocialMediaChallenge2024.

Click here to view and download the daily prompts.


Here, you will find downloadable Infographics and materials which you can share on social media.

Here are some examples of what we have available…

Pre orders!

Thank you to all that supported our themed wonky donkey fundraiser. These are now being processed and will be hopefully out to you within a week or two.

We hope to do another themed merch fundraiser again soon so keep an eye out.

Members Only Specials and Discounts

If you would like access to Members Only Specials and Discounts please join EDSNZ and sign up to recieve our newsletters.


Please sign your support for this cause and a review of somatic disorders ASAP in the Diagnostic and Statistical Manual of Mental Disorders (DSM) within the American Pyschological association (APA) needed.


We are always looking for unique ways to fundraise for our community. With that in mind, we have Zebra related merchandise for purchase, with proceeds enabling EDSNZ to continue on their mission in New Zealand.

Below are just some of the things we have available, click on the pictures to see more details.

Keep checking back in our shop.. We are frequently adding new things.

If you wish to purchase any of these products, or would like to have them available for an event you’re holding, click here.

Don’t forget to have a regular look at our website to stay up to date with any changes and additions.

Our newly create brochures

We have created this pamphlet for you to distribute in your community to support awareness.. GP practices, physios, osteopaths.. anywhere that is part of supporting your lived experience.

We would love it if you could let us know where you’ve shared these pamphlets so we can follow up and support those places with more education.

 Get in touch with us and we can explain the process further.

2023 Survey

Based on our awareness month survey results last year, we made a infographic from detail received.

This information is invaluable for us to help better advocate your needs , thank you again to everyone who participated last year.

You’re more than welcome to print this survery results poster, and share this with any medical professional in your team.

Please find these resources below that we have either created or sourced for our community.

Our Support group Loosely Speaking, is a great way to connect with other EDS/HSD people.

Our Clinical Pathways, a great tool to bring with you to any new appointments.

We have created this Health Passport for our community.

Print this, fill out your information, and bring it along with you to any medical visits/appointments.

Our brand new brochure! Help raise some awareness by sharing these around. Either request them from us, or print them  yourself.

A great printable from
The Ehlers-Danlos Society for your wallet.
AnchorShopping this year using Mighty Ape, Paper Plus, NZ Sale, Book Depository etc?
Well you can earn free donations at no cost to you simply by shopping.

Such a great way to donate to EDS NZ while shopping for groceries, clothes, supplements, gifts and so so many more things

How it works
Rewardhub can earn free donations for EDSNZ just by doing every day online shopping from our Rewardhub page, and it won’t cost you an extra cent. A free and easy way to help good causes, in a world of online shopping!

Jump on and shop today  –

If you have any questions, please contact us on

Noho ora mai,