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 have Alstrom Syndrome OR by a parent or guardian who should represent and answer as if he/she is the individual with Alstrom Syndrome. Here is the link. Please share/or post it with the explanation to everyone you know in the Alström world. Click here to enroll and complete or continue the questions. https://vevox.app/#/m/160694774. Thanks in advance and hugs to everyone from Anne Nordstrom, PhD, Study Investigator and Robin, Executive Director, Alstrom Syndrome International.
We Support Rare Disease Day
February 23, 2023
