MEMBER BEST PRACTICES
Blodkreftforeningen (Norwegian Blood Cancer Association) is focused on creating an organisation that is responsive to patient and carer need. The association was founded in 1991 under the name Norsk Forening for Benmargstransplanterte to help and support leukaemia patients who had been treated with a stem cell transplant. In 2008, to fill a support gap, the mandate was changed to include all leukaemia patients regardless of treatment type, under the name Margen. In 2013, in recognition of the lack of support available to other patients and carers, the organisation took its current name, Blodkreftforeningen (Norwegian Blood Cancer Association), and expanded its reach to include all blood cancers and related blood diseases. It now has 7 locations and over 1500 members across Norway.
Blodkreftforeningen focuses its efforts on support and education, through their website, programmes and the I margen magazine that is published quarterly.
The organisation has a special focus on ensuring patients and carers have the emotional support they need through their diagnosis, treatment, and afterwards. Blodkreftforeningen acknowledges cancer changes your life and their members have indicated they need more support in learning how to adapt to this new situation. They believe the psychological care of patients and their cares is just as important as their physical health and have developed multiple approaches to helping patients and carers in this area.
This includes a peer support program where patients can speak to volunteers that have had similar experiences in a safe environment, at no cost. This program has proven hugely beneficial for those newly diagnosed.
A large part of their website is focused on emotional and relational topics and they offer courses on these topics as well. They also have a dedicated program for youth and young adults to address their specific concerns.
Importantly, Blodkreftforeningen have been actively engaged on a national level in making sure rehabilitation is included in all cancer plans, including mapping available services and following up on individual cancer patient needs.
In addition to this important work, Blodkreftforeningen hold numerous educational sessions each year on understanding the diseases, understanding treatments, long term effects of treatment, etc. They also host an annual national conference, providing their members an opportunity to learn from local experts, network with each other and host group outings to encourage a sense of community.
Other advocacy initiatives include ensuring access to latest therapies and increased research spending for blood cancers; and public health issues like vaccinations for all citizens to help protect those with a compromised immune system.
Thank you to the Blodkreftforeningen team for the support you provide those with a haematological disease, as well as their families.