Ehlers-Danlos Syndromes New Zealand is a non-profit charity run by New Zealanders who have Ehlers-Danlos Syndrome. Our committee is made up of a President, Secretary, Treasurer and committee members. We are run by unpaid volunteers who work hard to raise awareness of Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders on behalf of all those in New Zealand Aotearoa who are diagnosed, newly diagnosed, or on their journey to get a diagnosis. Because EDSNZ is a Non-Profit, and staffed by unpaid volunteers, we rely on donations, merchandise sales, and nationwide fundraisers to raise money to help support kiwis with EDS/HSD. We do as much as we can for free, but we also have many projects that need to be paid for from community donations, merchandise sales and fundraisers.
We have some amazing medical professionals who regularly help EDSNZ by creating lectures and doing seminars pro-bono in order to help get our costs down. The only costs associated with some of these lecture series as been a koha as a thank you gift from EDSNZ. These lectures and seminars are available in the Patient Support section of our website for free.
So where does the money that has been donated to EDSNZ go? Please read on below for more information about what has been done so far and what we plan on doing in the future. All entries have costs attached along with details about what donations and profits from merchandise sales and fundraisers have been spent on.
Along with the projects and costs outlined above, we also have regular payments going out.
So now that you’ve seen what donations, merchandise and fundraising events pay for, please consider supporting EDSNZ to help us cover the costs of projects and our yearly subscriptions.