The ALGSA is a proud sponsor of the 8th Annual SBP Rare Disease Day Symposium, the first scientific meeting to be convened that focuses specifically on Alagille Syndrome (ALGS). The Symposium title is "Alagille Syndrome - New Research, New Hope". Expert talks addressed ALGS pathology, biliary paucity, genetics, Notch signaling, and biliary development and regeneration. The goal of the meeting was to bring together researchers studying ALGS and related fields to foster new perspectives, ideas, and collaborations to accelerate efforts towards a cure. Registration is now closed, but many presentations will be recorded and available for viewing on SBP’s website after the event. SPB Website Link.
The Symposium took place in San Diego, California on Friday - February 24, 2017 from 9 .a.m to 6 p.m. PST.
Here is the Agenda for the event and some more details:
The latest Links4Life is ready for you. Download it now Latest Links4Life Download Link. Highlights of this issue include exciting information about our new Alaina Kaitlyn Hahn Celebratory Scholarship which is now open for applications , some information about Rare Disease Day which is coming up fast (February 28th), a new edition of Roberta's Ramblings (you need to check it out!), and a wrap up of 2016's Virtual Walk. If you want to receive a paper copy, please use the contact form on this website to send us a note. Make sure you include your mailing address. Thank you!
February 28th, 2017 marks the tenth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities based on the theme of research.
You can learn more at the Rare Disease Day website: Rare Disease Day Official Website.
To celebrate we designed an ALGS Warrior t-shirt. The shirt helps raise awareness for our favorite rare disease (ALGS), and it supports the overall Rare Disease Day event. You can purchase your ALGS Warrior t-shirt from our ALGS Gear page. We are encouraging everyone to take a selfie wearing the ALGS Warrior t-shirt and post it to their favorite social media site. Don't forget to use the hashtags #rarediseaseday and #algswarrior. Have fun!
Alaina Kaitlyn Hahn Celebratory Scholarship for the 2017-2018 academic year
The Alaina Kaitlyn Hahn Celebratory Scholarship funds the education of high school graduates or GED credential recipients with ALGS who are entering or enrolled in an accredited US university, college or vocational school and choose to pursue higher education in the human biological, medical, or health sciences. This is a $500 scholarship for a single year and is renewable one time, subject to open competition with other applicants, for a total possible award of $1,000.
Application materials are available below. Applicants can download the PDF or Word versions of the forms and fill them out. Then they can save them and email them or print them and snail mail them to us. Email submissions should be made to email@example.com with "AKH Scholarship" in the subject line. Snail mail submissions should be mailed to the following address:
The ALGSA - AKH Scholarship
10500 SW Starr Drive
Tualatin, OR 97062
The application deadline is March 31, 2017 (11:59 pm in the recipient’s time zone when submitted by email; or postmarked by for mailed applications). Award notification will occur after May 1, 2017