Free Sialic Acid Storage Disorder: Progress and Promise
"We initiated a multidisciplinary collaborative effort involving worldwide academic clinical and scientific FSASD experts, the National Institutes of Health (USA), and the FSASD patient advocacy group (Salla Treatment and Research [S.T.A.R.] Foundation) to overcome the scientific, clinical and financial challenges facing the development of new treatments for FSASD. We aim to collect data that incentivize industry to further develop, obtain approval for, and commercialize FSASD treatments. This review summarizes current aspects of FSASD diagnosis, prevalence, etiology, and disease models, as well as challenges on the path to therapeutic approaches for FSASD ."
WATCH: 3-Minute Talk by Marya Sabir, National Human Genome Research Institute
The STAR Foundation Patient Contact Registry is an international registry hosted by Qualtrics in support of Free Sialic Acid Storage Disease (FSASD) patient outreach. This registry collects patient and patient caregiver contact data to be used for the purpose of providing families with targeted information regarding FSASD patient community support, emerging research efforts, and treatment information.
STAR Patient Contact Registry
Visit our STAR pages for information on individual families and their updates.