ALAGILLE SYNDROME ALLIANCE e-News
The ALGSA e-news is part of the Alagille Syndrome Alliance outreach program. Started in November of 2017, 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. For example, the first issue contained news about the Alaina Kaitlyn Hahn Celebratory Scholarship, info on the annual ALGSA fund raiser (Fight for a Better Life), helpful info on insurance for ALGSA families and a spotlight on an ALGSA hero. It really is a great newsletter. If you aren’t currently subscribed, please let us know. We would love to keep you in the loop! 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 for free. Note that the newsletter used to be called “Liverlink” and then “Links4Life”.
Alagille Syndrome Alliance e-news May 2018
Gala of Dreams The Dawn of a Dream To 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.
Alagille Syndrome Alliance e-news March 2018
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.
Alagille Syndrome Alliance e-news February 2018
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.
Alagille Syndrome Alliance e-news January 2018
The Alaina Kaitlyn Hahn Celebratory Scholarship is NOW open for applications for the Alaina Kaitlyn Hahn Celebratory Scholarship for the 2018-2019 academic year.
Alagille Syndrome Alliance e-news December 2017
Join Us to Celebrate Rare Disease Day 2018 in Sioux Falls The ALGSA Board of Directors and staff will be in Sioux Falls, South Dakota, USA, for three events at the end of February 2018.
Alagille Syndrome Alliance e-news November 2017 (FIRST EDITION!)
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!
