10th Alstrom Syndrome International Family Conference, Scientific Symposium
It is with great joy after more than 3-years, with the COVID pandemic mostly behind us, that we all now join together in support of the Alström community for the 10th Alström Syndrome International Family Conference and Scientific Symposium! During the following 4-days you will have the opportunity to meet family members new to Alström […]
Alstrom Update – Please Donate
The mission of ASI is: To provide support, information, and coordination world-wide to families and professionals to treat and cure Alström Syndrome. Update from Alstrom Syndrome International
FDA post EL-PFDD event survey
Hello everyone! The FDA post EL-PFDD event survey is ready to go. This survey should be completed by people who did not attend in person or virtually or those who did attend but did not fill out the survey during the meeting on September 22. The survey should be filled out by only those who […]
Updates on Information, Opportunities, and an Important Save the Date
Dear Family, I deliberately used the word “denizens” above because the most common definition is “inhabitant.” However, one also finds “one admitted to residence in a foreign country, “especially an alien admitted to rights of citizenship” and also “one that frequents a place.” All seem suitable for this post since we now have known patients […]
Giving Tuesday is here!
Giving Tuesday is here, and it’s a time we can all get behind ASI and help meet our fund-raising goals. Click on the image below to download to ASI today! Thank you everyone for all that you do!
2019 Fund Drive!
Dear Alström Family and Friends, For many years ASI has been “sailing to windward” against the wind and often against the cultural tides that decreed that rare diseases were “orphan diseases” and somehow did not merit the same interest or support garnered by grander national and global health issues. Despite the “knock down” we all […]
Upcoming Multidisciplinary Clinic at Greater Baltimore Medical Center (GBMC) March 5 – 8, 2020
PLEASE NOTE: THIS CLINIC WILL BE FOR THOSE 1 -17. Anyone is welcome! Information and consults will be in English. WE NEED TO HEAR FROM YOU BY December 15, 2019! BACKGROUND: As many of you are probably aware, ASI realized the long-held dream of establishing an Alstrom Syndrome Center of Excellence, named for Jan D. […]
Upcoming Alstrom Syndrome Multidisciplinary Clinic
To: Adult Patients (and their parents) with Alstrom Syndrome From: Robin Marshall, Executive Director, Alstrom Syndrome International Re: Upcoming Alstrom Syndrome Multidisciplinary Clinic at the Jan D. Marshall Center of Excellence for the Treatment of Alstrom Syndrome at Greater Baltimore Medical Center (GBMC). Date: September 26 – 29, 2019 PLEASE NOTE: FOR THE FORESEEABLE FUTURE, […]
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
A Call to our Professional Colleagues!
We would like to extend a invitation to all of our professional colleagues to review the 2019 conference information and request your input! Please visit the page below for details! https://www.alstrom.org/a-call-to-our-professional-colleagues/