New RareX contact registry coming in 2024

During 2024, the STAR Foundation will establish a new international patient contact registry that will be hosted by RareX in support of Free Sialic Acid Storage Disease (FSASD) patient outreach.

This registry will collect 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. Part of this registration will ask for primary and specialty care provider contact information. This data will be used to build a database of caregivers providing support to FSASD patients around the world.

The intent is that, periodically, STAR Foundation will reach out to those care providers and facilite the exchange of knowledge to improve patient treatment outcomes across the spectrum. Please do not feel pressured to participate if you are uncomfortable. However, we urge you to participate if you can.

Every last bit of information helps in the study of rare disease. Registrant information will not be shared with anyone without your permission and is stored in a secure database.

If you are interested in participating in the registry, please email info@sallaresearch.org and we will be in touch as soon as the registry is established.