Resources- Specific Diagnosis Card Catalog- Norrie Disease

Who to Contact

Norrie Disease Association
Massachusetts General Hospital
E. # 6217
149 13th Street
Charlestown, MA 02129
(617) 726-5718
Fax: (617) 724-9620
E-mail: sims@helix.mgh.harvard.edu

The Norrie Disease Association is a voluntary not-for-profit service organization dedicated to providing support and information to people with Norrie Disease and their families. Norrie Disease is a rare inherited disorder characterized by blindness in both eyes at birth; some affected children may later develop mild to profound hearing loss and varying degrees of mental retardation.

Established in 1994, the Norrie Disease Association compiles and disseminates educational and research information on the disorder; maintains a patient registry; and provides referrals to medical and/or genetic services. The Association also provides educational and supportive information through its database, directory, and flyers.

Where to Go Chat with Others

Noonan Support
This is an open forum rare disease support eGroup for persons affected by "Noonan's Syndrome," family, medical professionals and anyone else interested in sharing information and/or support for affected individuals.

Noonan Syndrome
The Noonans Syndrome Support Group

Learn More About It

Noonan Syndrome
From eMedicine

Noonan syndrome
MEDLINEplus Medical Encyclopedia

Noonan Syndrome Information
from OMIM

Links

Noonan Syndrome Support Groups Web Page

Noonan Syndrome Society