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

  • What is a Clinical Trial? Clinical trials are an important part of the development of new drugs, treatments and tests. This page on the Raremark website tells you more about the different phases of a clinical trial.
  • Clinical Trials - What you should know (© Raremark). Six things you should know about clinical trials, presented as an easy to read infographic. Reproduced with the kind permission of Raremark.
  • Why do people take part in clinical trials? In a recent survey, Raremark asked members of the rare disease community about their motivations for taking part in a clinical trial.

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).
  • 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 support groups in the NZORD network will often have information on key people and institutions here and overseas, involved in researching their disorder.