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)

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, […]