Fairfield, N.J. — A two-day virtual event on March 15th and 16th will bring together more than 350 patients, caregivers, hepatologists, primary care providers, patient advocacy organizations and industry representatives all with one goal in mind—find solutions to improve health outcomes for all those suffering from rare autoimmune liver diseases. The group will address two main questions: how can people avoid misdiagnosis and achieve earlier diagnosis; and how can we reduce the patient burden to improve the overall patient experience.
“We were overwhelmed with the positive response from our community for our Autoimmune Liver Disease Forum. We originally planned on a small group of 75-100 but the need is so great and the interest so vast we’ve expanded the forum to accommodate more than 350 people,” said Lorraine Stiehl, Chief Executive Officer, American Liver Foundation. “It’s not easy living with an autoimmune liver disease and this response from our community just demonstrates that there is a great need to urgently find better treatments, develop ways to improve overall quality of life, and ensure an accurate diagnosis is made in a patient’s medical journey.”
Some of the more common autoimmune liver diseases include: Autoimmune Hepatitis, Primary Biliary Cholangitis, and Primary Sclerosing Cholangitis. An autoimmune liver disease develops when your own immune system mistakes normal, healthy tissue for a foreign body. As a result, the immune system attacks healthy liver cells (as with AIH) or bile duct cells (PSC, PBC).
“Autoimmune Hepatitis is a very important and underappreciated disease. Even more poorly understood is the Autoimmune Hepatitis caused by liver toxicity of supplements and over the counter medications,” said Dr. Dieterich.
American Liver Foundation offers many resources for people affected by autoimmune liver diseases including PBC videos and webinars, AIH and PSC webinars, animated video explaining PBC to children, an ALF Primary Biliary Cholangitis support group on Facebook, a PBC/PSC Support Group on Inspire and other free resources available through our helpline 1-800-GO-LIVER or at liverfoundation.org. For more information about the forum visit: alfevents.org/autoimmune-liver-disease-forum/.
The Autoimmune Liver Disease Forum is made possible through generous support provided by lead sponsor Ipsen and partnering sponsor Intercept.
Autoimmune hepatitis (AIH) is a disease in which the body’s own immune system attacks the liver and causes it to become inflamed. The disease is chronic, meaning it lasts many years. If untreated, it can lead to cirrhosis and liver failure. It is a rare disorder that affects females 4 times as often as males. Those with other autoimmune conditions have a 25-50% chance of developing another one and thus a higher risk for developing Autoimmune Hepatitis.
Primary biliary cholangitis (PBC) is a chronic disease that slowly destroys the bile ducts in your liver and can have no symptoms. There are about 200,000 PBC cases in the U.S. per year. PBC mostly affects women and appears usually in middle age. There is no cure, but treatment can help delay the condition’s progression and manage complications. A liver transplant may be required in severe cases.
Primary sclerosing cholangitis (PSC) is a chronic, or long-term, disease that slowly damages the bile ducts. Bile is a digestive liquid that is made in the liver. Approximately 70%–80% of patients with PSC have inflammatory bowel disease (IBD), ulcerative colitis or Crohn’s disease, with the majority (80%) suffering from ulcerative colitis. PSC affects males twice as often as females, and most often occurs in middle-aged adults. Despite being classified as a “rare” disease, PSC is the fifth leading cause of liver transplantation in the U.S.
The American Liver Foundation is the nation’s largest non-profit organization focused solely on promoting liver health and disease prevention. The American Liver Foundation achieves its mission in the fight against liver disease by funding scientific research, education for medical professionals, advocacy, information and support programs for patients and their families as well as public awareness campaigns about liver wellness and disease prevention. The mission of the American Liver Foundation is to promote education, advocacy, support services and research for the prevention, treatment and cure of liver disease. For more information visit liverfoundation.org or call:1 800 GO LIVER (800-465-4837).