About IDFNZ and The Kids Foundation
IDFNZ and the Kids Foundation were founded in the late 1980s by a group of concerned parents, and today they care for hundreds of families coping with chronic illness. IDFNZ is governed by an Executive Board . Two specialist subcommittees (medical and scientific) also advise and assist the Board.
IDFNZ is fully registered with the New Zealand Charities Commission as New Zealand Charity CC24570. Dedicated to provide New Zealand families struggling with chronic illness relating to Primary Immune Deficiency (PID); IDFNZ was first incorporated in 1989 and is proud to have served this section of the New Zealand special needs community for over 21 years. There are over a Hundred individual PID conditions, some of the better known are: Severe Combined Immune Deficiency, Common Variable Immune Deficiency, IgA deficiency, IgG subclass deficiency, Transient hypogammaglobulinaemia, Chronic Granulatous Disease, Complement deficiencies, Hyper IgE syndrome,Di George Syndrome.Plus - plus many other related immune complex conditions.
The patients affected by these conditions face ongoing health crisis due to repeated, long lasting infections, which may be life threatening. Long term organ damage as a result of infection can lead to other health complications. Treatment may involve repeated hospitalization, ongoing antibiotics, plasma (immunoglobulin) transfusions, bone marrow transplantation etc. Ongoing health issues can adversely affect a patients education, social and financial status, as well as impacting on the whole family.
The KIDS Foundation is our youth section of the Foundation, specifically supporting New Zealand's chronically ill children affected by PID conditions (including PID bone marrow transplant and plasma IVIG/ SCIG recipient patients). In addition, KIDS Foundation also supports chronically ill liver transplant, gastro and bowel transplant children facing secondary immune problems. KIDS Foundation works closely with a wide network of community groups supporting chronically sick children facing ongoing health issues, with the aim of improving quality of life for child patients and siblings. Membership of IDFNZ and KIDS Foundation is FREE as we recognize that the price to be eligible to join as patient members is high enough.
IDFNZ is a member of IPOPI (the International Patient Organization for Primary Immune Deficiencies), and a founder member of IDFAPA (Immune Deficiencies Foundation Asia Pacific Alliance).
Organisational Structure
The Foundation is an Incorporated Society and Registered Charity; it is
governed by a Board of volunteer
members. Auditors IDFNZ has had a longstanding commitment to being externally
audited each year.
Our current auditors are UHY Haines Norton Chartered Accountants, 15 Edsel
Street, Henderson.
Lawyer Duncan Cotterill Lawyers, PO Box 10-376, Wellington
Legal Entity: Incorporated Society Registered Charity CC24570
Tax status: IRD Number: 55-267-340; GST Registered.
Tax exempt under sections 61(25), 56A and 147 of the Income Tax Act 1976.
Support Services
Regional support staff offer direct contact with all members as required. They can relate to the day to day issues facing families offering practical support and understanding. Staffs also match families with similar medical disorders if requested, and organise various social and educational events to bring groups of families together. A regular newsletter and up to date information is made available to all members. This life line can make all of the difference to families in crisis.
Advocacy
Living with chronic ill health, often leaves individual patients feeling they are battling alone to gain a decent quality of life. By working on behalf of a registered patient group IDFNZ has been successful in gaining what families need. Patient members of the Foundation are encouraged to utilise the free advocacy service if there are problems occurring in accessing health care or entitlements.
Education
Information can make all the difference between coping with adversity and "going under" with the stress. The Foundation is dedicated to the provision of the latest information on disorders affecting patient members, therefore empowering families to make well informed life affecting decisions.
Research
IDFNZ is committed to supporting PID research here in New Zealand to directly benefit member families. The Foundation has actively sponsored unique PID research over the last 5 years in conjunction with LabPlus, resulting in a number of new breakthroughs which have already helped families and resulted in new scientific papers being printed.
Respite Care
Patient members are battling continual health issues, spending significant time in hospital as regular outpatients and in many cases frequent hospitalisation.Life for these families is fraught with emotional and financial stress caused by the ongoing health issues and further aggrevated by living in temporary conditions and absence from home and family. This stress is felt by the whole family unit, not just the sick child. Continual stress can also create further problems to add to this sad situation.
A key need for these families is to experience quality 'time-out' together from this stressful environment; ideally to get away together for a complete respite break. The Foundation has been able to establish 4 holiday cottages across the country to be available for these families to use.
