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 […]
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 […]
We Support Rare Disease Day
February 28th is Rare Disease Tuesday, which Alstrom Syndrome International supports. https://www.rarediseaseday.org/
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 […]
