In 2017 KOSEK - national coordination of rare diseases - was created to support the establishment of rare disease networks in Switzerland.

The SSPGHN is committed to helping children and young adults with rare diseases. Therefore, our members take a leading role in the rare liver network initiative.

Autoimmune hepatitis is an inflammatory disease of the liver in which the body's own immune system mistakenly attacks liver cells. This leads to chronic inflammation, which can damage the liver if left untreated.

The disease can occur at any age. It often begins gradually, but symptoms may include jaundice, fatigue or abdominal pain.

The Swiss health booklet for newborns includes a screening card for biliary atresia. In biliary atresia, the bile ducts become atretic and bile cannot be excreted in the stool, resulting in pale stools. Since early surgery (“Kasai operation”) is required for a good prognosis, early detection of the disease is essential. An easy-to-use screening tool is the stool color card. The stool color of a newborn is compared with the examples provided on the card and discolored stools are identified. The pediatrician can then initiate further tests if necessary.

Blood work

Ultrasound

Elastography

Liver biopsy

Genetic tests

Viral infections affecting the liver and causing inflammation. All 5 have a different course of disease. Vaccines against Hepatitis A and B exist.

In cases of acute or chronic liver failure, liver transplantation is the treatment of last resort. After transplantation, the host's immune system will fight the foreign body, which is why long-term immunosuppressive medication is required. Since liver transplantation is fortunately rarely necessary and not a handful of children and adolescents need a liver transplant every year in Switzerland, liver transplantations are only performed at the University Children's Hospital in Geneva for all Swiss under the age of 16.

MASLD is a fatty liver disease that is often linked to obesity, lack of exercise or metabolic disorders.

The liver stores too much fat and can become inflamed.

Prevention and treatment involve healthy diet, exercise and medical supervision.

Morbus Gilbert- Meulengracht is a genetic variant in which the liver does not properly metabolize bilirubin. During infection or fasting yellow sclera may be obvious. There is no need for treatment.