Coffin-Lowry Syndrome

 

Who to Contact

Coffin-Lowry Syndrome Foundation (CLSF)
Mary Hoffman
675 Kalmia Pl NW
Issaquah, WA 98027
425-427-0939 (Call after 5 pm PST or on weekends)
E-mail: CoffinLowry@Gmail.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.

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