Vision

Our vision is to help to create a clear diagnostic path for Salla patients and their families; a clear standard of care to guide clinicians caring for Salla patients; a forward-thinking research roadmap leading to treatment and therapy discoveries, all while cultivating a robust, global community that supports patients, families and their health care teams.

Goals

1. 1.We will invest in the capacity of STAR by creating a structure to 1) cultivate community among families across the globe impacted by Salla diseases; 2) create patient centered programming to support families and 3) expand the global network of clinicians and researchers working with Salla disease and Free Sialic Acid Storage Disorders (FSASDs).
2. 2.STAR will invest in improving treatment of Salla disease, by convening clinicians and families to create a standard of care for Salla patients, publishing that care standard, and disseminating it to clinicians around the globe.
3. 3.STAR will invest in increasing fundraising capacity to allow the organization to expand direct funding of cutting edge research leading to therapies, treatments and clinical trials.