Patient organization

Patient organization

A patient organization can play an important role in the lives of people with a disease and their near ones. The Marshall-Smith Syndrome Foundation does this by raising awareness about the syndrome. They provide tools for doctors and other healthcare providers to enable them to give better care to people with MSS. One of these tools is de standard of care for MSS. You can find this document on marshallsmith.org Active parents work together with other volunteers on an international level. Because there are so few people with MSS, international cooperation is important.
The foundation stimulates contact between patients and their near ones by organizing family days. You can read more about the family days and other activities organized by the foundation on the website marshallsmith.org and on the Facebook page.