ALAGILLE SYNDROME ALLIANCE e-News
The ALGSA e-NEWS is a new addition to the Alagille Syndrome Alliance outreach program. The ALGSA e-News is a monthly email newsletter filled with family stories, relevant information for the ALGS community, the latest news in ALGS science, and more. To subscribe, click HERE and request to receive the ALGSA e-NEWS in the contact form provided. Below are archived ALGS e-NEWS which you are welcome to enjoy.
Gala of Dreams The Dawn of a DreamTo celebrate raising $12K+ through the RARE Carousel of Possible Dreams for ALGS research at Dr. Duc Dong’s lab at SBP, we’re hosting a Gala of Dreams event in San Diego at the Marriott Del Mar the evening of June 30, 2018. The theme is "The Dawn of a Dream" signifying new advances in ALGS research, our first participation in the RARE Carousel of Possible Dreams campaign, and a celebration of our 25th year in existence.
A Virtual Space for Children with Liver Disease and Their Families For patients suffering from rare forms of liver disease , finding other people with the same illness can be tough. Even doctors studying these illnesses can have trouble finding enough patients for their research.
What does Rare Disease Day mean to you? Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.
We are so excited to roll out our very first e-newsletter for the Alagille Syndrome Alliance. This e-newsletter has been a goal of the ALGSA for a long time and one we hoped we'd see come to fruition sooner than later!