Coffin-Lowry Syndrome

Who to Contact
Where to Go to Chat with Others
Learn More About It
Web Sites
Search Google for "Coffin-Lowry Syndrome"

Who to Contact

Coffin-Lowry Syndrome Foundation (CLSF)
Mary Hoffman
3045 255th Avenue S.E.
Sammamish, WA 98075
425-427-0939 Call after 5 pm PST or on weekends
E-mail: CLSFoundation@yahoo.com
Website: http://www.clsf.info/

CLSF serves as a clearinghouse for information on CLS and as a general forum for exchanging experiences, advice and information with other CLS families. The Foundation seeks to become a visible group in the medical, scientific, educational and professional communities in order to facilitate referrals of newly diagnosed individuals, and to encourage medical and behavioral research aimed at finding the cause of CLS in order to improve methods of social integration of CLS individuals. CLS has a parent-to-parent matching program and will match families geographically or based on similar concerns such as scoliosis or other health problems.

Where to Go to Chat with Others

• CLS Foundation
  The purpose of this Group site is to provide families affected by Coffin-Lowry syndrome a forum in which to exchange information, ideas, pictures, anecdotes and advice.

Learn More About It

• Frequently Asked Questions About CLS

• Coffin Lowry Information Page
  From the National Institute of Neurological Disorders and Stroke

• Coffin Lowry Syndrome information from OMIM

• Coffin Lowry Syndrome

Web Sites

• Coffin-Lowry Syndrome Foundation