Young families, where a child (0-10 years) is newly diagnosed with a bleeding disorder, often need support and information to manage the impact of the disorder on their family. The National Family Camp enables parents to access education in a supportive environment, while their children are enjoying their own recreational programmes. Opportunities are included for families to mix and mingle so that they can establish friendships and develop support networks with other families who understand and live with bleeding disorders.
Living with a bleeding disorder, or living with a person with a bleeding disorder, is challenging. The Adult Weekend is an opportunity for adults with bleeding disorders to openly discuss their experiences, challenges, and concerns about living and aging with a bleeding disorder. The focus of the weekend is to increase knowledge about bleeding disorders, about upcoming trends and treatments, about aging with a bleeding disorder, and about the provision of health care in New Zealand, as well as learning about HFNZ and its activities. Some Adult Weekends also include partners.
Traditionally haemophilia and bleeding disorder education has been geared towards men. This residential workshop specifically targets women with bleeding disorders, and women who carry the haemophilia gene, of all ages. Women’s Weekend offers a safe and supportive environment where women can increase their knowledge, discuss issues that relate to their age and stage, or to being a carrier of the haemophilia gene.
The impact of a bleeding disorder on women is often hidden and under-recognised. These workshops provide young women with a bleeding disorder, including women who carry the haemophilia gene, with an opportunity to understand more about their disorder and its implications for themselves, their relationships, family planning, and their children, while enhancing their personal support network.
The development of an inhibitor, an immune response to treatment with clotting factors, is a risk for people with haemophilia. If an inhibitor develops it significantly changes the life of the individual, and their whānau. Inhibitor Workshops provide specific education for the whole family, and for all ages, on inhibitors and the management of their impact. The workshops help develop a supportive network for people with inhibitors and their whānau, reducing their sense of isolation.
NATIONAL: Children with bleeding disorders face a range of extra challenges not experienced by the majority of children. At the National Children’s Workshops, children with moderate and severe bleeding disorders are educated and supported, in a safe environment, to understand their condition and develop self-management skills and techniques.
REGIONAL: One member having a bleeding disorder affects the entire family. The Regional Children’s Workshops educate and support children with bleeding disorders of all severities, as well as their siblings, and the children of adults with bleeding disorders. In this environment brothers and sisters can learn about bleeding disorders while having fun together, and with other children.
Growing up is exciting, challenging, and often very confusing. When a bleeding disorder is added to the mix, the challenges of young adulthood only increase. The Youth Camp, for 10-18 year-olds, uses a combination of education, fun, and peer and mentor support, to help young people move to the next stage of managing their condition. The focus is on being well-informed and better able to make decisions about their bleeding disorder treatment, education, work, life-style and relationships.
The Youth Leadership Workshop is an invitation-only event for 18-30 year-olds who have stepped up within HFNZ. The workshop empowers young people with bleeding disorders to develop the skills and knowledge necessary to support physical activity, career paths, mentoring, and leadership skills. It also works to strengthen the future leadership of HFNZ by looking at governance, operations, activities, and opportunities.
The Advanced Youth Leadership Workshop is an invitation-only event for 18-30 year-olds who have stepped up to leadership roles within HFNZ, and have previously completed the Youth Leadership training. This workshop builds on the skills and knowledge learned at the previous workshop, and works to strengthen the future leadership of HFNZ by looking at governance, operations, activities, and opportunities in more detail.