In the project, patient organizations are also involved. Patient organizations work towards improving healthcare delivery and often represent specific patient groups. They are closely connected to the lived experience of a particular condition, as the members themselves are either currently or have been ill. This makes patient organizations important and valuable partners, as they not only speak about, but also on behalf of, the target group.

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SPKS

SPKS is dedicated to supporting people with stomach or esophageal cancer. They provide information about stomach and esophageal cancer and offer a platform for people with similar experiences. Additionally, they share information about scientific research, both for patients and researchers. A special working group with experts by experience focuses on providing advice on scientific research, with the perspective of patients being the priority. Want to know what SPKS does and what they stand for? Take a look at their website here.

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Living with Hope

Living with Hope represents patients with pancreatic cancer. The platform provides information about the disease, diagnosis, and treatment. In addition, they inform patients about scientific research. Like SPKS, Living with Hope encourages peer support through Facebook groups and a telephone helpline. Finally, the platform is committed to raising more funds for scientific research into pancreatic cancer in order to accelerate research and treatment. Read more about Living with Hope here.

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NFK

NFK stands for the National Federation of Cancer Patient Organizations. The goal of NFK is to improve appropriate care, quality of life, accessibility of healthcare, and prevention. Additionally, they also focus on patient participation, ensuring that scientific research, guidelines, and knowledge agendas align with the needs of patients. NFK is an umbrella organization for cancer patient organizations, including SPKS and Living with Hope. Read here which other organizations are also members.