Mission Statement


The Robinow Syndrome Foundation is a non-profit organization dedicated to providing emotional support. Our foundation is committed to making a difference by promoting education that increases awareness and acceptance of the medical conditions associated with Robinow Syndrome. The RSF supports continued research to improve methods of diagnosing, and treatments, and to reach out worldwide to all those affected. The RSF holds bi-annual conventions to further provide medical information, social, emotional and educational support.

The Robinow Syndrome Foundation was incorporated in 2002 as a 501(c)(3) non-profit organization for families, professionals and others concerned with Robinow Syndrome.
As the cause and treatments of the complex medical conditions, associated with Robinow syndrome is unknown, continued research and scientific studies are needed.
Our vision is to educate the public, empower individuals and families, and instigate research into the causes and appropriate treatments of the medical, educational, and social issues.

To offer support to all interested parties.
To empower individuals with RS and their families
To educate the general public, medical, and educational professionals, and government agencies by disseminating information about RS.
To facilitate and fund research on the conditions of the syndrome.
The Foundation is funded by private donations, grants, and fundraising activities.

This Web site is owned and operated by or on behalf of the Robinow Syndrome Foundation. We recognize that visitors to our site may be concerned about the information they provide to us, and how we treat that information. This Privacy Policy addresses those concerns. This policy may be changed or updated from time to time. 

The Robinow Syndrome Foundation ("RSF") uses its best efforts to respect and protect the privacy of our online visitors and donors. We will not share your e-mail address with third parties. The Robinow Syndrome Foundation lists of donors and/or members are never sold to third parties.

If you have any questions about our Privacy Policy, you can contact us at this address Robinow Syndrome Foundation, P.O. Box 66, Hurley, NY 12443. We are available to answer your questions or hear your concerns.


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