Welcome - Marinesco-Sjogren Syndrome (MSS) Community

What is Marinesco-Sjogren Syndrome (MSS) ?

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 small stature.

Source: Patient groups listed below

Marinesco-Sjogren Syndrome (MSS) Resources

More members stories

Latest Member Stories

Mihret's Story

by ooleytodd29 published 9 months ago
2 comments

Her geneticist ordered exome testing as a last resort, and they did find the gene mutation and were finally able to match all of her symptoms. Mihr...

Orlando’s Story

by meyretoth published about 1 year ago
One comment

Orlando was born in May 2002 at 6:45 PM. It was a cold day with drizzles. I will never forget that wonderful and blessed day. Nothing went wrong wi...

Partners and Patient Groups

RareConnect is a patient-led initiative. Patient organisations partner with EURORDIS, itself an international patient organisation, to create communities and provide moderators from within their network. The following patient groups are official partners of this community.