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- EIN 93-2278840
- info@mss-usa.org
- 996 W Camino Pablo Dr Pueblo West CO 81007 USA
- https://mss-usa.org/
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Nonprofit Overview
Causes: Health, Specifically Named Diseases
Mission: The mission of Marshall-Smith Syndrome Organization of the USA, Inc. is to provide comprehensive family support, advance research on Marshall-Smith Syndrome, and foster advocacy for individuals living with this rare genetic condition.
Target demographics: individuals diagnosed with Marshall-Smith Syndrome and their families
Geographic areas served: United States
Programs: 1. maintaining an online presence through an up-to-date website and activity on various social media platforms, 2. communicating with the families of patients with Marshall-Smith Syndrome, especially those new to the diagnosis, to help them make connections and navigate the practical aspects of their journey and reduce isolation, and 3. building strong relationships between families through various outreach projects and regular virtual and in-person family meetup events, 4. support research projects that improve understanding and increase quality of life for those living with Marshall-Smith Syndrome.