Rare Disease Focus February 2019
There are several hundred liver diseases known to exist- many of which are considered to be rare. What is considered rare? In Europe, 1 in 2,000 is considered to be rare, and here in the United States, a disease is generally viewed to be rare when it affects less 200,000 people total. February 28th is Rare Disease Day, and we’re spending the month shining a spotlight on rare liver diseases- especially rare pediatric liver diseases.
For a look at more liver disease overviews, we encourage you to visit the disease information pages on our website. Click on the links below to learn more about four rare liver diseases that affect infants and children.
Visit Faces of Liver Disease- Find a story of hope from people who have lived with liver disease, who are caring for people with liver disease or are treating people with liver disease. Browse our library of stories or select from this menu to read about stories associated with a specific liver disease.
Share your Story- Provide comfort and inspire others by sharing the story of your journey with liver disease.
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Additional Rare Disease Information
ALF Outreach- At the end of 2018, the American Liver Foundation participated in a one-hour listening session on rare pediatric liver diseases with representatives from the FDA. The goal of this session was to provide the FDA officials with the perspective and needs of patients living with rare pediatric liver diseases. Read more about our efforts!
NORD- The National Organization of Rare Disorders is the leading patient advocacy organization dedicated to improving the lives of individuals and families living with rare diseases. Visit their website.
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