2nd Asia-Pacifiic Lysosomal Conference 2019

Rare Disease Day 2013

  • A Rare Disease Day Forum was held in Wellington on 28th Feb which bought together a number of patient groups and affected families to discuss the issues of access to medicines. Click here to see the presentations.

2013 saw LDNZ families really getting  involved, below is just a small list of the things that took place on Rare Disease day.

  • Families told their stories about living with a Rare Disease these were published in various local papers.
  • Lawyers in Wellington held a morning tea.
  • Schools got involved with a mufti day, some chose to wear some form of denim for the day. 
  • A preschool was in chaos with balloons everywhere there was face painting
  • Oliva Lane whose sister has GM1 ran a cupcake stall at her school and raised $248.00
  • Honda New Zealand ran a dress down day
  • There was a Prom night in Palmerston North
  • Hairdresser - Salon One in Tauranga had a gold coin donation on the day.
  • Lysosomal families in Auckland held a movie night and got together again and held two sausage sizzles.
Rare Disease Day Dernie
Greg Crooks, John and Sonia Dernie, Patricia Visgar 
Bayfield School
Bayfield School's mufti day