Performance Report 2021

Performance Report for Ehlers-Danlos Society New Zealand Incorporated, also known as Ehlers- Danlos Syndromes New Zealand.

Year ending 31 March 2021.

Full Performance Report available in PDF Here, with a preview of the contents below, alternatively you can watch our AGM here. Please feel free to leave a comment on this post if anything needs changing.


Non- Financial Information

  • Entity Information
  • Statement Of Service Performance

Financial Information

  • Statement Information
  • Statements of Resources and Commitments
  • Notes to the Performance Report

Entity Information

Who we are? Why do we exist?
Legal name of entity : Ehlers-Danlos Society New Zealand Incorporated
Also known as : Ehlers-Danlos Syndromes New Zealand
Type of Entity and legal basis (if any) : Non-Profit Charitable Society
Registration number : CC55826
Society number : 2704932

Enitity’s purpose or mission:

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.

Ensuring that medical professionals and patients have access to the correct information, and that patients are able to access support, and that patients know their rights and know how to advocate for themselves.

Entity Structure:

Ehlers-Danlos Syndromes New Zealand’s Leadership consists of the President, Secretary and the Treasurer. The Secretary position was reintroduced within this 2021 financial year. Our Committee size has fluctuated during this year. We had a total of 7 committee members at 31 March 2021.

The main Sources of the entity’s cash and resources:

This year we have received donations from fundraisers, personal donations, and as birthday donations, all of whom have been thanked for their donations. We have also done a merchandise-run of T-shirts, lanyards, phone-grips, cooling towels, coffee cups, and earrings. We have also connected with Techsoup to tap into their non-profit resources, have a Non profit discount with Xero, and have connected with Reward Hub after this resource became available since COVID-19. We also bought a supply of postage paid envelopes for our mail outs for awareness, which will hopefully supply us for a few years to come.

The main methods used by the entity to raise funds:

The main way we actively received money through our own efforts was through merchandise sales.

Because of this pandemic, it has been made blatantly clear where the holes are in the system, and in turn where improvements can be made. It is also shown us how accessible things can be made for us. We hear what our community needs are and we are joining with other communities to ensure our voices are heard. The accessibility that has opened up for us here in New Zealand, means that we have been able to join much more international conferences than we ever have had in the past.

– Kelly McQuinlan, EDSNZ President.

EDS Clinical Pathway

After much hard work by many clinicians in the field, we are lucky enough to have this Ehlers-Danlos Clinicial Pathway.

This document is made for all clinicians in New Zealand who may need some guidance with treatment and diagnoses.

Please find the link here to this document. Please feel free to share this document with any clinicians you feel may benefit from reading these guidelines.