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 […]
