Alagille syndrome (ALGS) Awareness Day – Where powerful connections can make the difference.

“We were shocked” That is how Celine felt when her family received the news that her daughter Suzanne had been diagnosed with the rare liver disease, Alagille Syndrome (ALGS) at just a few months old.

We at Ipsen are standing alongside the Alagille Syndrome Alliance on 24^th January, which is ALGS Awareness Day, and every day. We understand the importance of supporting patient organisations in raising awareness about these rare and challenging diseases, so that families know they are not alone.

Hear from Roberta Smith, President of the Allagille Syndrome Alliance as she shares what she wishes everyone knew about ALGS and the importance of awareness days [ADD LINK HERE].

The Alagille Alliance works to serve families across the world, who are living with a diagnosis of ALGS. The organization consists of  professionals in the ALGS community including patients, caregivers, and friends who all deeply understand the complex and difficult nature of ALGS. Their mission is to mobilize resources, facilitate connections, promote unity, and advocate for a cure to inspire, empower, and enrich the lives of people affected by Alagille Syndrome.

To learn more about ALGS from a family living with the disease, listen to Celine and Suzanne’s story here.