Nager Syndrome

Foundation for Nager and Miller Syndromes (FNMS)

• People served: Individuals and families dealing with Nager and Miller Syndromes
• Services provided: Information, resource library, and support
• Address: 1827 Grove St. #2, Glenview IL 60025-2913
• Phone number: 1-800-507-3667
• Contact person: Margaret Ieronimo
• Email address: fnms@interaccess.com

Neurofibromatosis

The Neurofibromatosis Association (United Kingdom)

• People served: Individuals and families dealing with neurofibromatosis
• Services provided: Information exchange, support, printed materials, and newsletter
• Address: 82, London Road, Kingston-upon-Thames, Surrey KT2 6PX
• Phone number: 0181-547-1636
• Email address: icd@pobox.com

Neurofibromatosis, Inc. (United States)

• People served: Individuals and families dealing with neurofibromatosis
• Services provided: Independent and regional chapters throughout country and online bulletin board
• Address: 8855 Annapolis Rd., Ste. 110, Lanham MD 20706-2924
• Phone numbers: 1-800-942-6825 or (301) 577-8984
• Email address: NFInc1@aol.com, flamingo@execpc.com
• Website: http://www.nfinc.org/

The Children's Tumor Foundation: Ending Neurofibromatosis Through Research (United States)

• People served: Individuals and their families dealing with neuorfibromatosis
• Services provided: information, newsletter, public awareness, links to other neurofibromatosis
• associations around the world, and research
• Address: 95 Pine Street - 16th Floor; New York N.Y. 10005
• Phone numbers: 1-800-323-7938 or (212) 344-6633 Fax 212-747-0004
• Email address: info@ctf.org
• Website: http://www.ctf.org

Congenital Giant Nevi

Please note: Nevi can appear on any part of the body.

The Giant Nevus Association (France)

• People served: Individuals and families dealing with congenital giant nevi
• Services provided: Information and referral, support, public awareness, and financial assistance
• Contact people:
• President: Laurence Baert
• Address: 14 rue de Vozelle, 03110 Vendate France
• Phone number: (33) 70.56.57.70
• Secretary: Jean-Pierre Gruchot
• Address: 14 D. rue Marie Laurencin, 71230 Saint-Vallier France
• Phone number: (33) 85.58.95.33
• Treasurer: Alain Baert
• Address: 14 rue de Vozelle, 03110 Vendat France
• Email address: Assonev@aol.com

Nevus Netwerk Netherland

• People served: Individuals and families dealing with congenital giant nevi
• Services provided: Information and support
• Contact person: J.H. Boschstraat
• Email address: netherland@nevus.org

Nevus Network (United States)

• People served: Individuals and families dealing with congenital giant nevi
• Services provided: Information and networking, message board, and photos
• Address: P.O. Box 305; West Salem, OH 44287
• Phone numbers: (419) 853-4525 or (405) 377-3403 (Will not return long distance calls)
• Email address: info@nevusnetwork.org
• Website: http://www.nevusnetwork.org/

Nevus Outreach, Inc.

• People served: Individuals and families dealing with congenital giant nevi
• Services provided: Information and referral, advocacy, and support
• Address: 600 SE Delaware Avenue, Suite 200; Bartlesville, OK 74003
• Phone number: (918) 331-0595 or Toll Free (877) 426-3887
• Website: http://www.nevus.org/

Noonan Syndrome

Please note: Children, teens, and adults with Noonan Syndrome have facial anomalies that don't usually require reconstructive surgery.

Noonan Syndrome Group (Australia)

• People served: Individuals and families dealing with Noonan Sydrome
• Services provided: Information and support
• Contact person: Mrs. Judy Cork
• Address: 303 Rowe Street, Eastwood N.S.W. 2122
• Phone number: 612 804 6759

Noonan Syndrome Group (Canada)

• People served: Individuals and families dealing with Noonan Syndrome
• Services provided: Information and support
• Contact person: Mrs. Margaret Hann
• Address: 36 Templehill Bay N.E., Calgary Alberta T1Y 467
• Phone number: 403 285-4209

Noonan Syndrome Group (The Netherlands)

• People served: Individuals and families dealing with Noonan Syndrome
• Services provided: Information and support
• Contact person: Mrs. Hetty Lemmens
• Address: Nevadaweg 25, 2905 AM Capelle a/d IJssel
• Phone number: 31 104585309
• Email address: 104136.3646@compuserve.com

Noonan Syndrome Group (New Zealand)

• People served: Individuals and families dealing with Noonan Syndrome
• Services provided: Information and support
• Contact person: Mrs. Josie Cunningham
• Address: 94 Castor Bay Road, Castor Bay Auckland 1309
• Phone number: 09 4104792

Noonan Syndrome Group (Norway)

• People served: Individuals and families dealing with Noonan Syndrome
• Services provided: Information and support
• Contact person: Mr. Oyvind Romo
• Address: Ibsensgate 20 N-8650 Mosjoen

Noonan Syndrome Society (United Kingdom)

• People served: Individuals and families dealing with Noonan Syndrome
• Services provided: Information, support, and public awareness
• The Birth Defects Foundation, Noonan Syndrome
• Martindale, Hawkes Green, Cannock, Staffs, WS11 2XN
• Phone number: 01543 468400
• The Noonan Syndrome Foundation
• Chelsea House, West Gate, London W5 1DR.
• Contact person: Sheila Brown

The Noonan Syndrome Support Group, Inc. (United States)

• People served: Individuals and families dealing with Noonan Syndrome
• Services provided:
• Offline: Information, networking, support, public awareness, and newsletter
• Online: Listserv, introductions, and chatroom
• Address: P.O.Box 145; Upperco MD 21155
• Phone numbers: 1-888-686-2224 within the USA or (410) 374-5245
• Contact person: Wanda Robinson
• Email address: wandar@bellatlantic.net or info@noonansyndrome.org
• Website: http://www.noonansyndrome.org

Nystagmus

Please note: Nystagmus (involuntary movement of the eye) occurs with many types of craniofacial anomalies.

American Nystagmus Network (United States)

• People served: Individuals and families dealing with nystagmus
• Services provided: Information, links, and listserv
• Contact person: Jeffrey Beall
• Email address: jbeall@fas.harvard.edu

Nystagmus Network (United Kingdom)

• People served: Individuals and families dealing with nystagmus
• Services provided: Information, public awareness, and support
• Contact people:
• For questions about nystagmus or the Nystagmus Network John Sanders, the Honorary Chairman
• Address: 43 Gordonbrock Road, London, SE4 1JA England
• Email address: eyesiteJS@msn.com
• Professionals contact: Claire Entwhistle, our Development Officer at Nystagmus Network
• RNIB Garrow House 190 Kensal Road London,W10 5BT
• Phone numbers: 0181 968 6161
• Email address: NystagmusN@aol.com
• Membership Secretary: Nystagmus Network
• Address: 9 Calthorpe Road, Stoke Hill, Exeter, EX4 7JS
• Email address: fn33@cityscape.co.uk