Charities Commission Registration CC22512

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.

• Starting the Journey: introducing a range of issues that are likely to affect you.
• 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.
• Other New Zealanders’ Stories: we’ve learned a lot from others, and gained inspiration as well.