Rare Disease Day is an internationally recognised day that began in Europe on 29th February 2008 with the intention that this special day was to be celebrated every four years on Leap Day, but the momentum and enthusiasm for the day grew until it became an annual celebration with events taking place around the world.

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.

Greg Crooks, John and Sonia Dernie, Patricia Visgar

Bayfield School's mufti day

Facts on Rare Disease Day

Although rare and genetic diseases, and their symptoms, are uncommon for most doctors, rare diseases as a whole represent a large medical challenge. Combine this with the lack of financial or market incentives to treat or cure rare diseases, and you have a serious public health problem.

Did you know that:

  • There are approximately 7000 different types of rare diseases and disorders, with more being discovered each day.
  • If all the people with rare diseases lived in one country, it would be the world’s 3rd most populous country.
  • In the United States, a condition is considered “rare” if it affects fewer than 200,000 people. In the United Kingdom a disease is considered rare if it affects fewer than 50,000 citizens per disease.  
  • 80% of rare diseases are genetic in origin and thus are present throughout a person’s life even if the symptoms do not immediately appear.
  • Approximately 50% of the people affected by rare diseases are children.
  • 30% of children with a rare disease will not live to see their 5th Birthday.
  • According to the Kakkis EveryLife Foundation, 95% of rare disease have not one single approved drug treatment.
  • 350 million people globally are fighting rare diseases.
  • Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease.

John Forman
Email john.forman@xtra.co.nz