New Zealand Organisation for Rare Disorders
PO Box 38-538,
Wellington Mail Centre
Phone: +64 4 471 2226
Charities Commission Registration CC22512
Clinic nurses at the Paediatric clinic, or other specialist clinics, are likely to have more specific information about support that is relevant to rare and complex conditions, and the Paediatrician may suggest specific health workers such as developmental psychologists, physiotherapists and occupational therapists.
Contacts should be offered by these health workers to helping agencies like IHC, CCS, and Barnardos, if that is appropriate to you, but if formal support services are to be put in place by these agencies and paid for by the Health Ministry, a needs assessment will be required. This will be done by one of the agencies contracted by the Ministry to decide on your eligibility for this support. Some of these agencies are part of the District Health Board, and some are independent agencies, depending on the area in which you live.
Try our pages on Health Care & Support for links to many sources of practical advice and help.
The other approach to getting good formal support for health and disability needs, is to talk the issues over with other patients or families who have been through the same experiences. They will often be able to describe very clearly what worked for them, and why, and this may speed up solutions to your needs. This is another example of the benefits of early contact with the appropriate support group.