Bundesverband Niere e.V.
The Bundesverband Niere e.V. was founded in 1975 as a self-help network for people with chronic kidney disease. Under its umbrella, it represents the social, political and medical interests of kidney patients, dialysis patients, transplant recipients, as well as relatives in approx. 150 regional self-help groups - with approx. 14,000 members. From the very beginning, the goals of health-related self-help have included improving the quality of treatment and life. More than 130,000 people in Germany suffer from chronic kidney disease, which in most cases requires kidney replacement therapy. This mainly involves so-called haemodialysis or a kidney transplant. Such a disease means that the lives of those affected are fundamentally changed for the future, as there is usually no prospect of a cure. This does not only refer to the limitations caused by treatment procedures, medication or drinking and dietary restrictions. Rather, many other areas of life are also affected and called into question: Job, partnership and relationship, life goals and quality of life. A central function of self-help is communication from patient to patient and between relatives. Therefore, the following goals, among others, are on the agenda of the self-help network Bundesverband Niere e.V. (BN e.V.):
- Strengthening and informing patients and relatives so they can participate in the medical decision-making and communication process in a qualified manner. Especially when it comes to the choice of treatment procedure (shared decision-making).
- A general improvement in the quality of treatment for all people with chronic kidney disease, so that the people affected can live with the disease under good conditions for as long as possible.
- The third important goal is to increase the health-related quality of life for patients, relatives and medical staff. Coping with the disease improves when life satisfaction increases; this also applies equally to medical staff in terms of quality of work.
In order to achieve these goals, the Bundesverband Niere e.V. has created numerous support services. These range from the publication of topic-related flyers and brochures to the free kidney telephone as a counselling service, to the PatientenBegleitern who - as experienced patients - voluntarily take care of such matters in dialysis and transplant centres that cannot be covered by the medical professionals.
Role within IMMEDIATE
The German Kidney Association (Bundesverband Niere e.V.) uses its membership in the IMMEDIATE project less as a research partner than as a representative of the patient perspective to accompany the project and to communicate the progress, the intermediate results and finally the final result to the patient community. With the different communication channels, the German Kidney Association sees itself as a link between researchers and patients. During the project, publications in the association's journal and social media are planned. In addition, workshops and patient symposia will be held to communicate the core messages of IMMEDIATE to interested patients and the self-help network.