Kiwi CRPS
Charitable Trust
Nau mai haere mai e te whānau me nga hoa.
A very warm welcome to our website.
Kiwi CRPS Charitable Trust is a New Zealand charity providing support, friendship, awareness and education for those in New Zealand who are living with, or have loved ones with, complex regional pain syndrome (CRPS).
We understand that a diagnosis of complex regional pain syndrome is a scary one. If you, like the majority of us, did a quick search on the web after leaving the doctor’s office, chances are you found some horror stories about CRPS.
It is our mission to be aware of the realities of CRPS but to do our best to be here as a positive force to support you and your family through this time.
Our story
The early days
We began as four individuals with CRPS in separate regions of New Zealand. As there was a lack of information regarding New Zealand-specific advice, and no national support group that connected all of us, we joined forces to create an online support group, Kiwi CRPS.
Over time other people began applying to join the support group. One of those people was running an existing separate group for parents of children diagnosed with CRPS. Adding her to our Kiwi CRPS family expanded our support groups, and thus added the parents group.
Kiwi CRPS had its first gathering in 2013. It was during this weekend that we spoke about what it was we personally needed from a support group, and as a support group what more we could be offering. From this the charity was born.
The second important step to come of this gathering was seeing the connections made between our children and partners. We realised how vital it is for the families involved in the day to day caring of those with CRPS to also receive support.
Today
In 2022, Kiwi CRPS joined Rare Disorders NZ, the national organisation supporting New Zealanders who live with a rare condition and the people who care for them. Rare Disorders NZ’s mission is “to champion and amplify the collective voice of New Zealanders with rare disorders, advocating for access to world class and world leading health, disability, education and other services” (RDNZ). We are looking forward to how our association with them can strengthen our collective voices.
Our future
Moving forward, Kiwi CRPS is planning to run some workshops with our members on topics of interest to them. These workshops will be delivered online and will focus on people’s experiences, and tips, with symptoms, triggers, treatments, management techniques, lifestyle factors such as diet and sleep, and more.
What we do
Support groups
We understand that CRPS can greatly limit your ability to get out of the house and deal with social interactions, thus increasing the feelings of isolation. To help combat this our support groups are nationwide and are conducted primarily through Facebook, allowing us to connect with you anytime, anywhere.
Advocacy
Kiwi CRPS works to raise awareness of the condition in our communities, the media, and in government. Rare Disorders NZ advocates for all rare conditions in Aotearoa New Zealand and we actively take part in their campaigns.
In February 2023, board member Debbie Beazley represented Kiwi CRPS at a function at Government House hosted by Her Excellency, The Rt Hon Dame Cindy Kiro, where Rare Disorders NZ launched their new parent and caregiver guide. Debbie took along one of our families dealing with complex regional pain syndrome, Gemma and her son McCauley. McCauley was given the Governor-General’s pin.
Dame Cindy Kiro, February 2023 (Photo: Rare Disorders NZ)
In February 2024, Debbie attended an event in parliament, again organised by Rare Disorders NZ, to see them present their 2024 white papers. Many other rare disorder support group leads were there and politicians from all the major parties. The white papers, Impact of living with a rare disorder in Aotearoa New Zealand and its companion paper that focuses on the experiences of Māori, is based on data gathered in their biennial Voice of Rare Disorders surveys. Kiwi CRPS encouraged our members to fill in last year’s survey and we are well represented in the data.
Around that time Debbie also gave an interview for Radio New Zealand for Rare Disorders Month (March 2024) where she spoke about living with complex regional pain syndrome. You can listen to it here:
Connect with us
In addition to our private Facebook support groups, we have a public page and are also on Instagram. Through these channels we aim to raise awareness of complex regional pain syndrome and share the realities but also, importantly, the positive stories of those living with CRPS. Follow us and be part of the conversations.
Colour The World Orange
Colour The World Orange day is on the first Monday of November each year. Landmarks around the world are asked to light up orange and people wear orange, all to raise awareness about Complex Regional Pain Syndrome. The whole month of November is also used to highlight CRPS awareness.
Below are photos shared with Kiwi CRPS taken from around New Zealand for Colour The World Orange, 6 November 2023.
