Medical overview

Family stories



Medical advisory board




Marinesco-Sjogren Syndrome (or Marinescu-Sjogren Syndrome) is a very rare genetic disorder characterized by ataxia (balance and coordination problems), juvenile cataracts, generally some degree of cognitive delay, and very small stature. About 100-200 cases of MSS have been diagnosed worldwide.  

The purpose of this website is to provide information and support to families affected by MSS and to encourage communication between doctors and researchers interested in this disorder.  The website provides information about MSS, as well as links to other useful sites.

Explore our site to learn more about MSS or contact us to communicate with other families.   This is a site run by a small number of MSS families, and dedicated to our very special children.   Please do contact us whatever your interest in MSS.  We will be delighted to hear from you and promise you a response.

If you are looking for information about Sjogren’s syndrome, an autoimmune disorder causing severely dry mouth and eyes, this is not the right website for you.  Please visit www.sjogrens.org.

MSS Gene Identified   - Learn about the Sil1 gene

RareConnect   - Connect with MSS Families around the World (English, Spanish, Italian, French, and German) – select the “MSS” community

Sign up for our newsletter

Join the MSS registry


Information in other languages:





This website was last updated on July 18, 2015.