10th Alstrom Syndrome International Family Conference, Scientific Symposium

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 […]

We Support Rare Disease Day

We Support Rare Disease Day

February 28th is Rare Disease Tuesday, which Alstrom Syndrome International supports.  https://www.rarediseaseday.org/  

Alström Syndrome International (ASI) Externally Led-Patient Focused Drug Development (EL-PFDD)

September 22, 2022 8:30am – 3:00pm Dear Alström Family, Voices of the People – The Alström Syndrome Journey Alström Syndrome International (ASI) Externally Led-Patient Focused Drug Development (EL-PFDD) Date: September 22, 2022 from 8:30 AM to 4:00 PM Where: The Sheraton North Baltimore Hotel in Towson, Maryland and available Virtually! Virtual link to come soon. What is […]

Upcoming Alstrom Syndrome Multidisciplinary Clinic in September 2021

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). AND, this year only, an opportunity to attend or participate in a daylong presentation about Alstrom Syndrome for and with guidance from the FDA as part of its Patient-Focused Drug […]

2019 Conference Attendee Feedback Needed!

Dear 2019 Conference Attendees, I’m writing again to encourage you to complete the attached Survey Monkey survey, regarding your experience in Galveston earlier this month. To date, fewer than 60 individuals have done so. I also have a suggestion! Take this opportunity to sit down with your children and to complete the poll with them […]

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

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)