New Zealand Organisation for Rare Disorders
PO Box 38-538,
Wellington Mail Centre
Phone: +64 4 471 2226
Charities Commission Registration CC22512
Starting the Journey
We know how tough this time can be, as we have been through it too. Emotions can range from disbelief and denial, through to anger and grief. At times the feelings may seem devastating. Having someone to share these feelings with can be an important part of the process of dealing with the reality.
We also believe that finding good, reliable information about the condition that affects you or someone you love, will make it easier for you to adjust and cope.
You do have one major advantage over previous generations, and that is the availability of information and ease of access to it. That is one of the key reasons for the development of this website. Through our links you will be able to find information that was previously very difficult or impossible for families to find. You may find in a few days, what others have taken decades to discover.
This knowledge will give you strength, even as it might also bring you information that is hard to bear. It may provide you with choices. When coupled with sharing your experiences with others, the knowledge of the condition is likely to give you some of the basics about clinical management issues. This may help you to participate in a partnership with your doctors and other health professionals, to get improved care. Greater knowledge will give you greater control over the situation, even if you cannot change it.
Our site will also guide you to a variety of support groups that may be of assistance to you - particularly by connecting you to others with the same or similar disorders and who have been through similar experiences.
And our extensive links to information resources should help you quickly find most of the health and disability resources that would be relevant to your situation.
You have just started a journey…. On the road less travelled.
It is one we would all prefer not to take.
But with good information and connection to others similarly affected, your journey can be made easier.