Alagille Syndrome Awareness Day seeks to unite global community
Jan. 24 virtual event also aims to increase knowledge about the disease
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International Alagille Syndrome Awareness Day is tomorrow, Jan. 24, and the advocacy organization Alagille Syndrome Alliance is calling on the community to stand together in a global virtual showcase where patients living with Alagille syndrome and their families can connect and feel seen.
As part of its social media campaign to call out all #ALGSAware voices, the advocacy organization has asked people to submit a photo and a few short sentences explaining what this day means to them and why awareness matters.
The day also aims to increase knowledge about the disease among doctors, researchers, and loved ones.
“International Alagille Syndrome Awareness Day brings our global community together in a way that is both deeply personal and far-reaching,” Cher Bork, executive director of the Alagille Syndrome Alliance, wrote in an email to Liver Disease News. “It connects patients and families who may feel isolated, while also educating new physicians and researchers whose work can shape the future of care. On January 24th, we amplify voices, share knowledge, and remind every person impacted by Alagille syndrome that their journey matters.”
Panda Express raising funds for alliance today
Alagille syndrome is a rare genetic disease caused by mutations in one of two genes — JAG1 or NOTCH2 — that help guide early development before birth. When these genes are mutated, normal development is disrupted, leading to the symptoms of Alagille syndrome. Identifying the disease-causing mutations helps with diagnosis and ensures patients receive timely, appropriate treatment.
The disease often affects the liver, especially the bile ducts, which carry bile, a digestive fluid, from the liver to the intestines. When bile ducts are malformed, narrowed, or missing, as occurs in Alagille, bile cannot flow normally. This can damage the liver and also make it more difficult for the body to absorb certain vitamins.
Problems in the heart, eyes, kidneys, bones, and blood vessels are also common in people with Alagille syndrome.
In addition to the virtual campaign, other activities set up by the Alagille Syndrome Alliance include the three-day Alagille Syndrome Adult Retreat 2026, which kicked off yesterday, Jan. 22, in Tampa, Florida. This event welcomes up to 25 adults with Alagille syndrome from the U.S. and abroad to gather and share experiences.
It is our hope that we can unite, relate, and empower everyone dealing with [Alagille syndrome], either mild or severe.
The Panda Express fundraiser is also taking place today, Jan. 23, with virtual orders placed using a special code helping to raise funds for the Alagille Syndrome Alliance.
As its awareness symbol, the alliance uses a multicolored ribbon that represents all the major body systems affected by the disease: yellow for the liver and digestive system, red for the heart and circulatory vessels, green for the kidneys and renal system, blue for the lungs and pulmonary system, cream/pearl for the bones, and purple for the brain, eyes, and ears.
“This ribbon acknowledges the diverse spectrum of [Alagille syndrome] cases, encompassing patients with both limited and widespread organ involvement,” the alliance says on its International Alagille Syndrome Awareness Day webpage. “When combined, the ribbons form a strong and beautiful representation of all of our Alagille Syndrome Warriors! It is our hope that we can unite, relate, and empower everyone dealing with [Alagille syndrome], either mild or severe.”
#ALGSAware content can be found on Facebook, Instagram, LinkedIn, and other social media. In addition to sharing personal stories, patients and their families can share videos to raise awareness or use fact sheets and graphics from the awareness day toolkit made available by the Alagille Syndrome Alliance.
