FDA’s Rare Disease Day

This year’s event on March 1, 2024 will explore ways to engage and collaborate with patients and advocates to support the development of medical products for rare diseases and address challenges with rare disease research. We have a packed agenda to empower patients with helpful information about clinical trials and engage local health care professionals […]

Giving Tuesday

Support Alström Syndrome International this Giving Tuesday! Let’s spread awareness and contribute to a brighter future for those affected by AS! Every donation, no matter how big or small helps those in need! #GivingTuesday #AlströmSyndrome #CharityImpact  

ASI Annual Fund Drive Letter

We want to express our deep gratitude for your continued support of Alstrom Syndrome International (ASI).  ASI Fund Drive Letter. Additionally you can scan the QR Code to make an online donation to ASI.  

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 […]

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

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