1st Annual Gala & Silent Auction in Good Will-Hinckley, ME
Our 1st Annual Gala & Silent Auction was Saturday, March 23rd in Good Will-Hinckley, ME. Thanks to everyone’s generosity we were able to raise over $14,000 for Alström Syndrome! The day of the Gala it snowed about 22 inches. We still had a great turnout at our Gala even with the weather. We greatly appreciate […]
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 […]
Alström Syndrome UK turns 25, AS Global is pleased to announce the world’s first annual lecture
Alström Syndrome UK turns 25, AS Global is pleased to announce the world’s first annual lecture all about Alström Syndrome. Invitation Dear Friends and Families, In celebration of Alström Syndrome UK turning 25, AS Global is pleased to announce the world’s first annual lecture all about Alström Syndrome. Alström Syndrome Past, Present and Future. You […]
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
Research Findings Provide Insights – The Alstrom Syndrome Journey
In the course of their effort to advance trial participation and to ultimately gain approval for the anti-hyperphagia drug Setmelanotide, Rhythm Pharmaceutical, with the cooperation of Alstrom Syndrome International, generated the following report to aid those interested in or needing to understand the lived experience of those impacted by Alstrom Syndrome. Ultimately, the FDA did […]
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 […]
Inaugural Alstrom Syndrome Pediatric Multidisciplinary Clinic at Indiana University in Indianapolis
Background As many of you are probably aware, in 2015, ASI realized its long-held dream of establishing an Alstrom Syndrome Center of Excellence at Greater Baltimore Medical Center. In what we intend to be the second of several additional centers, we have been working with Clair Francomano, MD at Indiana University School of Medicine and […]
