22/10/2025
https://www.facebook.com/share/p/16rHAfWEsm/
Rare Disorders NZ’s biennial Voice of Rare Disorders Survey is open until 31 October 2025. Don’t miss out on getting your voice heard!
If you, or someone you care for, lives with a rare disorder please take the survey today. We know your time is valuable – but so are your responses!
We use the anonymised data from our surveys:
✅To inform health professionals on how best to support patients living with rare disorders.
✅In our submissions on proposed policy changes that could impact the rare disorder community.
✅When presenting to Ministers and officials about the impacts of living with rare disorders.
✅To advocate for improved systems and services for the rare disorder community.
✅When educating the public and raising awareness about rare disorders in Aotearoa.
Your journey is unique and important and can help shape a better future for the rare disorder community. 🧡