The Rare. The Strong. Your Chance to Help.
Alagille syndrome is a complex and rare genetic disorder that can affect multiple organ systems of the body, most commonly, the liver. It is an inherited condition in which bile builds up in the liver because there are too few bile ducts to drain the bile. This results in liver damage. Alagille syndrome can also be associated with abnormalities of the heart, eyes, skeleton and kidneys. The estimated prevalence of Alagille syndrome is 1 in 70,000 newborns. This figure is based on diagnoses of liver disease in infants and may be an underestimation because some people with Alagille syndrome do not develop liver disease during infancy.
Being a rare disease, it is important to raise awareness and shed light on the impact this condition has on patients’ lives and their families. Awareness drives research and research provides hope for the thousands of families that live with uncertainty day to day. Alagille syndrome cannot be cured, but it can be treated to improve patient’s quality of life. To help those diagnosed with Alagille syndrome go through this life journey, the Alagille Syndrome Alliance (ALGSA) has dedicated its work and resources to supporting families and creating awareness for this condition. The mission of this international nonprofit organization 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.
In efforts to support the ALGSA, and the families it serves, we are pleased to announce that Mayan Technologies is an official sponsor of the 9th International Symposium on Alagille Syndrome “Discovering New Paths”, hosted by the Alagille Syndrome Alliance and presented by Albireo Pharma and Mirum Pharmaceuticals. This event will take place on July 16-17, 2021, where the Alagille community will come together to discover new paths.
This year, the event will be completely virtual and held on the MyCityMed fully integrated platform providing many more families the opportunity to participate. There will be interactive booths and virtual lounges where you can connect with others, experts, and scientists. If you’re interested in registering, this event has a "Pay what you can" registration fee.
If you are not able to attend the virtual event, there are numerous ways for you to get involved and help us spread the word! You can become a member of an ALGSA support group, host a fundraiser within your community, or by simply making a small donation to ALGSA Donate Now: Donate (onecause.com). For more ways to help, visit the ALGSA website and find the best way you can get involved. Thank you for considering joining us in the movement to raise awareness and support the lives of Alagille patients and their families!
For more information on Alagille syndrome, visit:
• Rare Diseases.org / Alagille Syndrome
• Hopkins Medicine / Alagille Syndrome
• MedicinePlus.gov / Alagille Syndrome