Rare Disorders Month is a chance for the 300,000 strong community of rare patients, as well as friends and whānau, to rally together and call for urgency in the health reform that has been promised.

We want New Zealanders all over the motu to glow up and show up for rare to show the rare community that they are valued and deserve better support.

We are listing community initiatives below, so if you are organising an event in your community, let us know so we can include it here!

Rare disorder community get-togethers

Timaru. Come meet others in the rare disorder community at this get-together at Cplay (Caroline Bay Playground). There are rooms available also if wet.

When: 17 March, 10am - 12 noon

Where: Caroline Bay Playground, 1 Virtue Ave, Caroline Bay, Timaru (Off SH 1, Evans St)

 

Rolleston. If you are in the Canterbury region, come meet others in the rare disorder community at this get-together at Rolleston Library (Te Ara Ātea), venue room TBC.

When: 31 March, 1pm - 3pm

Where: Rolleston Library, 56 Tennyson Street, Rolleston

 

Fundraising initiatives through sports

Steve Couch-Hill who lives with ANCA Positive Vasculitis and his wife Karen are participating in a number of sports events to raise awareness and funds for RDNZ:

  • Saturday 16 December Rotorua Suffer - Karen doing the Half Ironman, Steve doing the 10 km run
  • Sunday 4 February Clevedon Half Marathon - Karen doing the Half Marathon, Steve the 10km run
  • Saturday 2 March Ironman (International Event) - Karen doing the 70.3 (Half Ironman) 
  • Sunday 10 March GJ Gardener Homes Maraetai Half Marathon - Karen will do the full event, Steve the 10km
  • Sunday 14 April Karapiro Marathon - Karen doing the marathon, Steve doing at least a 10km Run (might be a half marathon)

A Rare Kind of Walk. James McGoram lives with Fabry Disease and is the Chair of Rare Disorders NZ. On 30th March James will be walking around Mt Eden loop (about 2.1km per loop) for as many loops as he can safely manage, encouraging people to walk with him and to donate to Rare Disorders NZ.

Join James - by walking a few loops of the mountain with him on the day, by donating to his Givealittle campaign, or by sharing this page with your friends and loved ones.

See the Facebook event here  

Visit the Givealittle page here