Home » German Liver Foundation provides information on “Rare Disease Day”: the liver can also be affected

German Liver Foundation provides information on “Rare Disease Day”: the liver can also be affected

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German Liver Foundation provides information on “Rare Disease Day”: the liver can also be affected

Thursday, February 22, 2024, 12:00 p.m

Hanover – The leap year 2024 puts “Rare Disease Day” in its rightful place: the rarest day in the calendar. On February 29, 2024, colorful and creative signs will be set under the motto: “Share your colors” to create more visibility for people with a rare disease. At the same time, the focus is on the three most important concerns of those affected: diagnosis, therapy and research. The German Liver Foundation supports the international day of action and provides information about rare liver diseases, the importance of early diagnosis and specific therapy, as well as research progress and novel treatment options.

According to the European Union (EU) definition, a disease is classified as a rare disease (“orphan disease”) if it affects no more than one in 2,000 people. In addition, the disease must be life-threatening, chronic and not completely curable. According to this definition, a total of more than four million people in Germany suffer from one of the more than 6,000 known rare diseases.

Even diagnosing a rare disease can be problematic. This also applies to rare liver diseases. These diseases, which are usually genetic or autoimmune, often do not cause any specific symptoms and are therefore difficult to diagnose. However, many rare liver diseases are treatable. Due to significant advances in the areas of diagnostics and therapy as well as new treatment approaches that are currently still being developed, it is important to recognize rare liver diseases in a timely manner and to offer those affected appropriate therapy.

Various rare diseases can lead to liver damage: The term autoimmune liver diseases summarizes a group of liver diseases that differ in the course of the disease and its severity, but have one important thing in common: the body’s immune system is miscontrolled. The body’s own structures are identified as “foreign” and fought against. These diseases are complex, often difficult to diagnose and represent a significant burden for those affected. The three most relevant autoimmune liver diseases include autoimmune hepatitis (AIH), primary biliary cholangitis (PBC) and primary sclerosing cholangitis (PSC).

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Prof. Dr. reports on the symptoms and current developments in PBC, which can lead to serious complications including liver failure and premature death. Michael P. Manns, CEO of the German Liver Foundation: “In PBC, chronic fatigue and itching are the most common symptoms. Unspecific upper abdominal complaints, joint pain or sicca symptoms, the so-called ‘dry eye’, are also part of the well-known spectrum of symptoms, which often significantly reduces the quality of life of those affected. The guideline ‘Autoimmune Liver Diseases’ currently recommends long-term treatment with ursodeoxycholic acid as the standard treatment for PBC. The response to this therapy must be closely monitored to, among other things, early identify high-risk patients who may benefit from approved additional therapies with obeticholic acid or bezafibrate. In order to be able to positively influence other aspects of the disease, such as liver fibrosis, additional therapy options are necessary. There are currently numerous new therapeutic approaches in clinical trials. These include peroxisome proliferator-activated receptor (PPAR) agonists, which showed promising results in phase III trials. We also observe positive effects when using various inhibitors, the so-called inhibitors. Personalized PBC therapies – adapted to individual risks and symptoms – may be available in the future, which can mean both an improvement in quality of life and control of progression for those affected.”

“Rare Disease Day” should remind doctors and patients how important it is to check liver values ​​in the event of non-specific complaints and to also consider rare liver diseases as a cause.

German Liver Foundation

The German Liver Foundation deals with the liver, liver diseases and their treatments. Its goal is to improve patient care through research funding, research networking and scientific projects. Through intensive public relations work, the foundation increases public awareness of liver diseases so that they can be detected and cured earlier. The German Liver Foundation also offers information and advice on medical issues. On the website you will find extensive information and images for those affected, interested parties, members of the expert community and media representatives: www.deutsche-leberstiftung.de.


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“The big cookbook for the liver” – 122 recipes with all important nutritional information; Kitchen tips and rules for a healthy liver diet, September 2022. The book is available in bookstores: ISBN 978-3-8426-3100-7 € 28.00 [D].

“The Liver Book” provides understandable and comprehensive information about the liver, liver diseases, their diagnoses and therapies, 4th expanded and updated edition September 2021 and is available in bookstores: ISBN 978-3-8426-3043-7, € 19.99 [D].

Journalists can request review copies of the books for their reporting by emailing [email protected].

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