Helpful information

To find online information provided by New Zealand support groups about specific conditions, we suggest you go to our support groups directory and follow the links to their websites and information pages.

For more technical information provided by some of the best medical databases and internet gateways, check out the resources available in the pages described below. These are high quality resources aimed largely at professionals, but often very useful to lay-readers. For some of them we provide "user guides" to help you find what you are looking for.

  • Rare Disease Databases
    These databases contain large quantities of information on many different diseases, and their main function is to provide up-to-date and accurate information to their target audience. Often they are written for health professionals and researchers, but many are also suitable for patients and their families. This section gives an introduction to some of the best rare disease databases that are accessible to all users.
  • Rare Disease Gateways
    The gateways perform a different function to databases. They provide links to many other sites that have disease information available. In this way they offer numerous sources of additional information. Some of these will be links back to the databases we have described, and some have interaction with the databases to give you an automatic search for your disease. They have a wide variety of other resources and links in the site too, and this may provide you with a lot of additional information relevant to your condition.
  • Patient Services
    This section lists some of the resources available in the health and disability sector in New Zealand. The services and resources listed here concentrate on information outside of the mainstream health and disability areas.
  • About Genes, DNA, Cells and Genetic Inheritance
    They are talked about so often, but not always well understood. Yet they have huge impacts on the person we are and our health status. This page provides links to explanations of these crucial aspects of our human condition, and to resources that explain how inherited genetic diseases are transmitted from one generation to the next. The sites range from information for readers with little science or medical knowledge, through to online medical textbooks.
  • Pre-Conception Genetic Screening
    Pre-implantation Genetic Screening (PGS) is an in vitro (IVF) process used to test embryos for serious inherited genetic conditions and chromosomal abnormalities before pregnancy. This can be especially important when a family member has been diagnosed with a rare disorder.
  • Rare Disease Day
    Rare Disease Day takes place on 28 or 29 February around the world and is an annual celebration and fundraiser for those Rare Gems in our community. Rare Disease Day is a chance to raise funds for the dedicated support groups who usually go unnoticed in our communities.
  • 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.
  • Glossaries of Terms
    Here we list some well respected glossaries that give detailed explanation of genetic and medical terms. These will be a helpful resource to professionals and lay-readers.