• 08:00 AM - 04:30 PM

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We are hosting a one-day hui in Wellington in November for all support group leads to get together in person, connect and collaborate.

The hui will provide a space for discussing common barriers and the importance of advocacy and effective messaging with others in the rare disorder community, with a focus on upskilling and understanding our next steps. We hope to inspire and empower each other to move forward with our rare disorder advocacy work.

Venue: Brentwood Hotel, 16 Kemp Street, Wellington

If you or your group are unable to cover costs for flights and accommodation, please contact us to discuss your needs and see how we might best be able to support you.

For those arriving in Wellington on Thursday 10th November, we welcome you to join us for a group dinner at the Brentwood. 

To register for the hui, please click here.

We look forward to seeing you there!

Draft Agenda

Thursday 10th November: Arrival/Group Dinner


Friday 11th November

08:00 Tea/coffee

09:00 Karakia and welcome

09:30 Panel discussion: Advocacy - Sharing success storiers and learning

10:15 Morning Tea

10:45 Advocacy and Consumer Rights

12:00 Lunch

12:45 Social media training

13:15 Break

13:30 Workshop - Looking ahead

15:00 Afternoon Tea

15:45 Questions to panel, discussion on next steps

16:15 Closing remarks

16:30 Finish

We really hope you can make it to our first in-person get-together in over two years, however, if you are unable to make it to Wellington, we will be live-streaming this event.

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