- Alagille Syndrome - Netherlands Chapter official website.
- American Liver Foundation website
- Brendon Ednie triple organ transplant article - report about Brendon Ednie, a child with ALGS who received a triple organ transplant (heart, liver. lungs) at Children's Hospital in Pittsburgh (Pittsburgh Post-Gazette - December 12, 1998).
- Bandaids & Blackboards - a website for kids with debilitating illness.
- Children's Hospital of Philadelphia (CHOP) - the Alagille Syndrome clinical care program website.
- Childhood Liver Disease Research Network (ChiLDReN) - the Childhood Liver Disease Research Network (ChiLDReN) is a collaborative team of doctors, nurses, research coordinators, and patient organizations throughout the U.S. and in Canada working together to improve the lives of children and families dealing with rare cholestatic liver diseases. The goal of the ChiLDReN team is to investigate genetic causes of intrahepatic cholestasis and to train the next generation of clinical researchers.
- Cincinnati Children's Medical Center - page dedicated to ALGS.
- Daniel Alagille - biographical information about Daniel Alagille, a French physician who specialized in pediatric hepatology, the study of childhood liver diseases, and who first described the disease in 1969.
- GeneReviews - a wealth of information about diagnosis and treatment of ALGS.
- GreatNonprofits - the ALGS page on the GreatNonprofits site highlights the Alliance.
- Japanese Alagille Syndrome website
- National Digestive Diseases Information Clearing House (NDDIC)- description of ALGS.
- Shire - Shire clinical trials website listing current research studies in ALGS.
- Shire Aces Scholarship Program - Academic scholarship program for high school seniors with rare disease. Students with ALGS are eligible to apply.
- YouTube - official ALGSA YouTube channel.
- Wikipedia - ALGS entry in Wikipedia
8th Annual SPB Symposium to Feature Alagille SyndromeFeb / /17
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 will address ALGS pathology, biliary paucity, genetics, Notch signaling, and biliary development and regeneration. The goal of the meeting is 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.
The Symposium will take 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:
Links4Life - January - March 2017Feb / /17
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!
Rare Disease Day 2017Feb / /17
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.
ALGS Warrior T-shirts AvailableFeb / /17
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!
Apply today for the Alaina Kaitlyn Hahn Celebratory ScholarshipFeb / /17
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 firstname.lastname@example.org 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
- * Scholarship Press Release - PDF
- * Scholarship Application Form - Microsoft Word - Fillable
- * Scholarship Application Form - PDF - Fillable
- * Complete Scholarship Materials - PDF