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Coffin-Siris Syndrome Foundation

To connect, support, and inform the Coffin Siris Syndrome community and to promote related research.

Coffin-Siris Syndrome Foundation is run by volunteers affected by Coffin-Siris Syndrome (CSS). We exist to care for this community and support research that furthers the understanding of this rare syndrome.

2023 Conference Group Photo by Positive Exposure


We are committed to running with minimal overhead in order spend every dollar possible that we receive to connect and support people affected by Coffin-Siris Syndrome. As of January 2018, we are a  501(c)3 non-profit in the USA from the IRS, meaning donations are tax deductible in the USA.



Send your donation via Paypal

Person with CSS


Make checks payable to:
Coffin-Siris Syndrome Foundation
11611 106th Ave NE
Kirkland, WA 98034

Coffin-Siris Syndrome Foundation was started in 2017 by parents of kids with CSS. It is incorporated in the USA as a non-profit and all-volunteer run. See the Articles of Incorporation, Certificate of Incorporation, and 501(c)3 Acceptance Letter. Tax ID: 82-2116961. 

We work hard to maximize the positive impact of every dollar that gets donated. In 2019 over 96% of the spending went directly to serving our mission for the CSS community with conference, research, meals, and other supports.

We are based in the USA and primarily serve people in the USA. Additional independent organizations are based around world: 

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