New network for lipodystrophy: Experts bundle forces in Germany

New network for lipodystrophy: Experts bundle forces in Germany

Leipzig, Deutschland - On May 27, 2025, the German Reference Network (DRN) for lipodystrophy and adipose tissue diseases was launched in Germany. The aim of the new network is to significantly improve the supply of people with lipodystrophy, a rare disease, which is characterized by an irregular fat distribution or the loss of adipose tissue. The network is coordinated by the Center for Rare Diseases (ZSE) of the Ulm University Hospital (UKU). A special highlight was the first patient day, which took place in Leipzig and included both lectures and interactive workshops.

Lipodystrophy is a complex challenge, since there is currently no healing or therapies to restore the adipose tissue. Nevertheless, the network connects nine medical centers and the self -help organization Netlip e.V. to ensure high -quality, guideline -friendly care for those affected. The focus is on extensive information and bundling expertise around adipose diseases.

patient day in Leipzig

The patient's day offered a platform for exchange between patients, relatives and specialists. The topics of the specialist lectures included diagnostics, therapy approaches, plastic-surgical possibilities as well as psychosocial aspects and current research. Interactive workshops dealt with the disease acceptance, nutrition and lifestyle. The leadership received special attention from a metabolic chamber, which is used for research purposes for energy and metabolic processes.

collaboration and research

The network members are also actively involved in research, further training and public relations. Part of this commitment is the coordination of case conferences, the development of supply paths and the creation of guidelines and the establishment of registers. These measures should not only improve the treatment of lipodystrophy, but also raise awareness of the disease in the general public.

A more precise understanding of the lipodystrophy and its effects on the quality of life of those affected shows the diversity of research approaches. Among other things, studies have shown that a high daily requirement of insulin, often over 200 units, is a typical feature of this disease. Increased triglyceride values ​​in the blood are also common; These can lead to serious health problems such as acute pancreatitis and vascular diseases. Insulin resistance, which can be caused by a stem -emphasized fat distribution, is another important health risk.

The diagnosis of lipodystrophy is based on external symptoms and extensive laboratory examinations, in which leptin, insulin, glucose and lipid values ​​are measured. A genetic analysis can help to identify specific genes that are associated with the disease.

Overall, the German reference network undertakes to further improve the quality of life of those affected by an interdisciplinary approach and to develop innovative solutions together with self -help and research. Further information is available on this topic at rare diseases and Charité .