Living with a rare disease
If you or someone you love has just been diagnosed recently with a rare disorder, or if tests are underway, then you probably have lots of questions and may not know quite where to start… That's an experience many of us had anyway, and we've collected this information to address the sorts of questions we had when starting out on our own journeys.
This introductory guide is written by family members for family members.
- A definition of rare disorders
- Starting the journey: introducing a range of issues that are likely to affect you
- Communicating with your GP: talking with GPs about your, or your child’s, rare disorder
- Getting a diagnosis: it can come in a variety of ways and at different times, each with different issues for you
- Finding information: our guide to information resources
- Connecting with others: who's out there with similar problems, and how to tap into what they've learned
- Getting help: some tips on making this easier
- Rare is Everywhere: Stories project: meet some of the 377,000 people living with a rare disorder in New Zealand
- Stories from around the world