Updated Conference Information!!!
Hi All, We have updated our Galveston Conference information including silent auction details, tentative schedule, and transportation details! See all Conference Information
Don’t Miss Out on the Early Bird Special!!!
Don’t miss it! Pay Now: Early Bird Special! Register by January 31, 2019 and receive a 10% discount on registration costs! Register Now to enjoy the Early Bird savings!
Upcoming Alstrom Syndrome Multidisciplinary Clinic at Greater Baltimore Medical Center (GBMC)
PLEASE NOTE: THIS CLINIC WILL BE FOR THOSE 17 AND UP. WE NEED TO HEAR FROM YOU BY FEBRUARY 25! BACKGROUND As many of you are probably aware, ASI has realized the long-held dream of establishing an Alstrom Syndrome Center of Excellence. In what we hope will be the first of several additional centers, we […]
ASI Signs 21st Century Cures Sign-On Letter
Alström Syndrome International was one of over 200 patient and research associations that signed this letter of support for moving the 21st Century Cures legislation forward in the United States. Yesterday, the National Health Council formally submitted the letter to leadership and released it to the press. Read the 21st Century Cures Act sign on letter (pdf)
Sharon Terry finalist for Health 2.0 Patient Activist award — vote!
Sharon Terry — with a great team — is Genetic Alliance, a good friend to ASI, and a partner in many of our endeavors. Jan would surely be voting for her, please take a moment to vote your support using the form at the link below. Sharon’s name is in the “Patient Activists” category. The […]
Conference Agenda and Schedules now Online!
We have added some new files and pages so that you have early access to all of the activities and the full conference schedule. We also have included links to the websites for all of our activities at this year’s conference. The schedules are available as both HTML or PDF, so you can print them, […]
Vote for Alstrom Angels to win a $10,000 donation for research!
CitiBank in Lubbock Texas will donate $10,000 to the winning charity. LET’S MAKE SURE THAT ALSTROM ANGELS IS THAT CHARITY! Keep those votes coming Alstrom Land! Alstrom Angels is currently in first place – You can vote once per day for each of your email addresses. Click here and VOTE AGAIN today: https://www.citybankonline.com/communityrewards#rewards-form
International Rare Disease Day 2014
Today is International Rare Disease Day! Spread the word, raise awareness for Alström Syndrome. Wishing you all a productive day for our cause!! Rare Disease Day 2014
ASI Awarded PCORI (Patient-Centered Outcomes Research) Contract
Hello Everyone!It’s always nice to be able to send along really good news. Yesterday, the Genetic Alliance and ten rare disorder partners were awarded a large contract by PCORI (Patient-Centered-Outcomes-Research-Institute). Although we often measure progress by the drop, this is a whole bucket, and it’s making a very big splash too! We will be in […]
It’s finally time!!!
We are extremely excited that the 7th Alstrom Syndrome Family and Medical Conference is starting up on May 9th!, just a few short days away! We are looking forward to seeing old friends, making new ones, and enjoying all the goings on we have planned in America’s Home Town, Plymouth, MA. If you’re attending the […]
