Support group leads gather for biennial hui

Support group leads converged from around the country in Wellington on 15 and 16 October for Rare Disorders NZ’s biennial Support Group Lead Hui at the Brentwood.

The two day agenda was packed with sessions to inform, to educate and to enhance collaboration, along with opportunities to discuss, ask questions and contribute ideas.

There were sessions on storytelling for impact and using social media; Aotearoa Disability Law provided an educational session on the UN Convention on the Rights of Persons with Disabilities, and HQSC facilitated a workshop on working together as a collective.

We also heard from the health agencies responsible for implementing the Rare Disorders Strategy. They presented on their implementation plans for the coming year and answered questions from those present. The two day hui concluded with a Q&A session with the RDNZ Board of Trustees.

In between the sessions were plenty of opportunities to connect and network; an important part of these hui. It is often through these moments that support group leads can share learnings with one another, seek advice about challenging situations or just reconnect and have a laugh.

Support group leads play an invaluable role in the rare disorder community. They are the linchpin in New Zealand for the disorder they represent. They are the ones who get contacted when someone diagnosed with the disorder joins the group, has questions or seeks advice. They are the ones Rare Disorders NZ contacts when we seek lived experience expertise for that disorder, and who write submissions and advocate on behalf of those living with the disorder. For the vast majority, they do this in a voluntary capacity with very limited resources.

The feedback was overwhelmingly positive and there was strong consensus that these hui are beneficial and meaningful. We look forward to hosting the next one in 2028!