Liver Lowdown February/March 2019

2/28 is Rare Disease Day!

Rare Disease Day takes place each year on February 28th. This day is meant to raise awareness about rare diseases, including all rare liver diseases, and the impact they have on patient’s everyday lives.

To learn more about Rare Disease Day and what the American Liver Foundation has been doing to bring awareness to rare pediatric liver diseases throughout February, click here.

The FDA Hears From ALF and Rare-Disease Patients

On November 5th, 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.

Click here to read the full summary from the meeting

Spotlight on Crigler-Najjar Syndrome

Crigler-Najjar Syndrome, an extremely rare-pediatric liver disease, affects less than 1 in 1 million children worldwide. The American Liver Foundation has been working to raise awareness and educate the public on this rare liver disease. We recently created a webpage and easy-to-understand graphic that explains what exactly Crigler-Najjar Syndrome is. 

Click here to view the page.

Rare Liver Disease in Pregnancy

Intrahepatic Cholestasis of Pregnancy, also known as ICP, is a rare liver disorder that occurs in pregnant women. ICP affects the flow of bile, leading to buildups of bile acid in the blood. ICP occurs in approximately 1 to 2 pregnancies out of 1000, though the prevalence is higher among certain ethnic groups.

Click here to learn more about this rare liver disease.

Join us at a Liver Life Walk in 2019!

Liver Life Walk is hosted in 41 cities across the country and is the largest national fundraising walk related to liver health in the United States. The walk allows people affected by liver disease to come together to raise awareness, funds and the opportunity to support each other in a festive and inspiring environment. The LaRosa family walks for Micco, who was diagnosed as an infant with Alagille Syndrome. Read more about Micco’s story and other walker stories and find a 2019 Liver Life Walk here!

The American Liver Foundation National Helpline offers support to patients, families, caregivers and the general public via phone, email, and community outreach. Our dedicated staff is available to answer questions about liver health, and provide educational support and information on local resources. We’re here for you from 9am-7pm ET, Mon-Fri. Give us a call today at 1-800-GO-LIVER (1-800-465-4837)!