Rare Disease Day cocktail evening

Cocktail evening invitation
View invitation

NZORD invites you to a cocktail evening on Monday 29th February to celebrate Rare Disease Day, to be held in Wellington at the Wellington Club. Rachel Callander from the Super Power Baby Project will be our special guest speaker.

Tickets are on sale now for $75. Order yours from comms@nzord.org.nz.

Meeting the community

On March 1–3, NZORD’s chief executive Letitia O'Dwyer will be travelling to Auckland, Christchurch and Dunedin to meet members of the rare disease community. Please pop in to say hello and catch up over refreshments. View the graphic showing the dates and venues.

Research

There are many ways to find out what research is going on, but it can be a difficult path to this information. Our links will guide you to a number of good sources about who is doing what to understand and control various diseases and disabilities, but some detailed searching may be necessary to find what you are looking for.

International Research - has databases that include major information resources covering many diseases and over thirty years of major health research grants.

New Zealand Research - provides links to health and disability funding grants plus links to major research institutions in New Zealand.

Modern Biotechnology - explanations and links on topics like genetic modification, cloning, stem-cell research and xenotransplantation.

The Human Genome Project - an insight into the project that is accelerating the pace of knowledge and research.

Clinical trials registers:

  • The EU Clinical Trials Register allows you to search for information on clinical trials in European Union (EU) member states and the European Economic Area (EEA) and clinical trials which are conducted outside the EU/EEA if they form part of a paediatric investigation plan (PIP).
  • ClinicalTrials.gov is published by the U.S. National Institutes of Health to provide patients, family members and members of the public with current information about clinical research studies.
  • ANZCTR (Australia New Zealand Clinical Trials Register) is an online clinical trial register, mainly comprising clinical trials being run in Australia and New Zealand.

The New Zealand Institute for Rare Disease Research is the research arm of NZORD. After a number of years developing a Biobank in partnership with Otago University, the Institute has expanded its remit to include a directory of rare disease researchers' within New Zealand and has opened up the Biobank to accept human samples.  

And the Support Groups in the NZORD network will often have information on key people and institutions here and overseas, involved in researching their disorder.

James