Haemophilia Foundation of New Zealand Incorporated
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HFNZ's mission statement is to provide excellence in care, education, advocacy and support to all people in New Zealand with bleeding disorders and their family/whanau.
Through our Outreach Workers, innovative educational initiatives and camps, physical activity and support footwear programmes, and educational grants, HFNZ is able to assist people with these chronic disorders through all stages of their life. We provide the tools to give our members a voice and try to ensure they receive the best care that medicine can offer - as despite advances in genetic technology a cure remains elusive.
The Haemophilia Foundation of New Zealand Inc (HFNZ) was originally founded as the New Zealand Haemophilia Society in 1958. The Foundation's story begins with one family seeking more information of their sons' rare, and then untreatable, disease, haemophilia. Haemophilia is characterised by a reduction or absence of a protein in the blood essential for clotting. A group of like-mined people eventually joined together to form an organisation whose goals are very similar to the those HFNZ holds today - to connect families of people with haemophilia with each other, to help younger members with their education, and to provide news of and access to the latest medical advances.
Today, HFNZ comprises four regions throughout the country (Northern, Midland, Central, Southern), with an Outreach Worker assigned to each. The National Office and administration of the Foundation is located in Christchurch. The National Council is responsible for the governance of the Foundation, on which sits the National President, two Vice-Presidents and a Treasurer, and a representative from each of the region's own committees. All Council positions are voluntary and decided by election at an Annual General Meeting.
Winning a donation from Sovereign will help us achieve:
The running of the Bi-Annual Youth and Teen Camp in January 2011. Part of the mission at the Haemophilia Foundation of New Zealand Inc (HFNZ) is to help prepare young people with bleeding disorders for the challenges they will face when coping with a chronic, incurable, health condition and ultimately support them to become stronger and in control of their wellbeing.
The HFNZ Youth and Teen Camp is an educational and recreational retreat for two groups of young men with haemophilia and other related bleeding disorders, those aged 10-15 years and also 15-25 years from all over New Zealand. Haemophilia is a rare condition and can lead to feelings of isolation. This specialised programme evolved out of the recognition that people with haemophilia are better able to engage and learn in smaller groups with peers facing the same hurdles. HFNZ Youth and Teen Camp brings together young men and gives them opportunities to interact and forged further friendships with others who share the same concerns and challenges of living with a bleeding disorder. For some, camp will be the first time that they have encountered others with a bleeding disorder. This camaraderie provides campers with a sense of relief that they are not the only ones with haemophilia.
Young men have the opportunity to learn about their disorder with special workshops and enjoy having fun whilst being 'just like everyone else'. Young people who attend Youth and Teen Camp often return home with an increased sense of self-confidence, a new-found sense of community, and, for many, the ability to self-infuse their own treatment. The Aims and Objectives of this National Camp include:
- To provide information and education about bleeding disorders, their treatment and management, appropriate to each young person’s needs and developmental stage.
- To reduce the sense of isolation for youth with bleeding disorders by congregating them together for mutual support.
- To enhance the relationship between the haemophilia medical staff and families affected by bleeding disorders through informal access.
- To teach self-infusion to youth who have not yet mastered the skill to administer their own treatment.
Young adults affected with a bleeding disorder must navigate even more carefully than most through certain rites of passage, such as choosing physical activities/sports, choosing a career or beginning relationships. They face unique challenges as they prepare for the important steps on the road to becoming an adult. The programme is designed so that while afternoons are planned around recreational activities, the mornings are devoted to an Education Programme. The Education Programme will cover topics such as the basics of haemophilia and von Willebrand Disorder, venous access workshops, and psycho-social workshops for encouraging independence and responsibility in youth with bleeding disorders and managing a balanced life. These sessions provides a unique opportunity as the psycho-social benefits of the camp cannot be accessed through the traditional medical system. Guest speakers such as a haematologist, haemophilia nurse and physiotherapist will be invited from the closest Haemophilia Treatment Centre to participate and provide expert opinion during the educational sessions.
Through this programme HFNZ is attempting to provide support for youth as they discover what haemophilia means for them. The young men have the chance to share their experiences, learn about issues they face now or in the future, and most of all have a good time. The programme is expected to impact participants by giving them the tools to confidently face their future as independent, responsible and happy members of society.
Our details:
| Registration No: | CC22765 |
| Region: | Hawke's Bay/East Coast, Waikato/Bay of Plenty/Rotorua, Manawatu/Wanganui/Kapiti, Northland, Taranaki, Wellington, Auckland, Central Auckland, South Auckland, North Auckland, West Auckland, East Auckland, Canterbury/South Canterbury, Nelson/Marlborough, Otago/North Otago, Southland, West Coast |
| Category: | Children's disability support, Parental advice and support, Children's health and rehabilitation, Teenage advice & support, Children's health - life threatening illness |
| Contact Person: | Belinda Burnett (Chief Executive Officer) |
| Address: | PO Box 7647 Sydenham Christchurch 8240 |
| Telephone: | 03 3717 477 |
| Email: | belinda@haemophilia.org.nz |
| Website: | www.haemophilia.org.nz |
| No. helped nationally: | 107/ 223/ 138 |
| No. helped per project: | 107/ 0/ 138 |
| Existing sponsors or funders: | Baxter Healthcare Bayer Pharmaceutical CSL Novo Nordisk Wyeth |
