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 an EL-PFDD?
ASI submitted a Letter of Intent to the US Food and Drug Administration (FDA) to host and present an Externally-Led PFDD meeting to the FDA, the Pharmaceutical Industry, Healthcare providers, and most importantly the ASI family! The purpose of this event is to raise awareness on a national and global scale in order to promote interest in and to motivate research and drug development for persons living with Alström Syndrome (AS). The presentations will include A-Teamers, parents, researchers, and clinicians to provide insight into the lived experience and disease burden that those with AS overcome on a daily basis. Our hope in an event such as this one is that the sharing of the AS lived experience will encourage further research and development to help the cherished members of our Alström Family live longer, happier, and healthier lives. We look forward to seeing you all then!
Robin Marshall and Chase Palmer
Alström Syndrome International