President
Alagille Syndrome Alliance
Roberta Smith, President of the Alagille Syndrome Alliance (ALGSA), has served the Alagille Syndrome (ALGS) community since 2005 and is a Nuclear Medicine Technologist by trade. Mom to 21 yr old twin daughters, one having ALGS, she found the Alagille Syndrome community while starting her journey as a caregiver. Roberta joined the ALGSA board in 2013, becoming President in 2017. Now, leading of the ALGSA, she is focused on elevating the patient voice, pushing family and patient experiences to the forefront, and facilititaing collaborative connections within all stakeholder groups for the purpose of advancing disease education and understanding, drug development, science and research, and most importantly, postiive outcomes for patients. Roberta has overseen the development of the ALGSA Scientific Research Network, was intimately involved in the drug development process for now two FDA approved drugs for Alagille Syndrome, and is a known rare disease advocate and public speaker. She is currently finishing up her Master of Science in Organizaitonal Leadership degree, has earned a Leadership of Nonprofit Organizations Graduate Certificate and Bachelor of Business Administration with a concentration on Nonprofit Leadership, all inspired by her children and their family journey with Alagille Syndrome.
Thursday, May 29, 2025
3:30 PM - 4:30 PM East Coast USA Time