Jul 1, 2021, 12:18 PM

Our CE Lisa Foster recently met with Paula Tesoriero, the Disability Rights Commissioner, alongside support group leaders to represent the needs of the rare disorder community. 

Here is an update from Kelly McQuinlan, President of Ehlers–Danlos Syndromes New Zealand (EDS): 

“We had a meeting with Paula Tesoriero on 28 June. This meeting was to let Paula, our Disability Commissioner of NZ, know where the system is failing us with rare disorders, and thoughts going forward.

Some of the main points I wanted to get across from my ‘EDS’ side was that rare disorders are often seen as “in the too hard basket”, and in turn, we fall into a grey area of the system, in all aspects. How are rare disorders going to be represented if we aren’t even invited to the conversations that are happening with regards to our health concerns, and in turn our disabilities; not being represented means we aren’t being seen.

Awareness, training, research and support currently is not sufficient within the New Zealand healthcare system for people with rare disorders and people with chronic and complex conditions; we are currently being socially disabled by our current systems.

Lisa from RDNZ pointed out that other countries around the world had pathways for care in place, and when Paula asked “So why don’t we have that in NZ?” I responded, “Because NZ doesn’t care about us enough.”

All in all, I think the meeting went well, I felt like Paula had heard us on all our initial points, and I feel hopeful that this conversation will continue. We are hoping to be linked in with a couple more conversations.”

Thanks to Sue (22Q) Kelly (EDS) Denise (Foetal Anti-Convulsant Syndrome) and Jamie (NZ Amyloidosis Patient Association) for attending this meeting with Rare Disorders New Zealand to represent the rare disorders community.

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