[MGH Neurosurgical Service] [BTC at MGH] [NCUs Guest Info System] [Mass Gen Hosp] [Harvard Medical School] [Partbers HealthCare]
Organizations devoted to support for and education regarding Cerebello-Pontine Angle (CPA) lesions

Back to the MGH/Harvard Cranial Base Center Homepage for more online information on CPA tumors and links to other on line resources

To the MGH/Harvard Neuro-oncology Homepage for online information about brain tumors and links to other on line resources on braion tumors.

To the MGH/Harvard Neurogenetics Homepage for more information on NF-2 and links to other on line resources on neurofibromatosis.

[NeurosurgicalService] Click on the Etherdome to return to the MGH/Harvard Neurosurgery Homepage .

Acoustic Neuroma Association

P.O. Box 12402
Atlanta, GA  30355
(404) 237-8023
FAX (404) 237-2704


Acoustic Neuroma Association of Canada

PO Box 369
Edmonton, AB T5J 2J6
(403) 428-3384

American Tinnitus Association

PO Box 5
Portland, OR 97207
(503) 248-9985

Deafness Research Foundation

9 East 38th St.
New York, NY 10016
Voice/TDD: (212) 684-6556
Voice/TDD: (800) 535-DEAF

National Temporal Bone Hearing and Balance Pathology Registry (The Registry)

(800) 822-1327

If you experience an ear problem such as deafness, dizziness, or infection, the scientific study of your inner ears could help in the search for causes and treatments of hearing and balance disorders. The Registry seeks people willing to bequeath their temporal bones to medical research.

NIDCD Information Clearinghouse

1 Communication Ave.
Bethesda, MD 20892-3456
Voice: (800) 241-1044
TDD/TT: (800) 241-1055

The NIDCD is the National Institute of Deafness and Other Communication Disorders, a part of the National Institutes of Health. The Clearinghouse is a national resource center for information on hearing, balance, smell, taste, voice, speech, and language.

National Neurofibromatosis Foundation

95 Pine Street - 16th Floor
New York, N.Y. 10005 
fax (212) 747-0004
voice (212) 344-NNFF/6633. 
voice (800) 323-7938 
(National Office hours are Monday through Friday, 9 AM to 5 PM EST) Voice mail messages for the NNFF
may be left by calling either phone after hours.)
e-mail NNFF@aol.com 

The National Neurofibromatosis Foundation , founded in 1978, provides neurofibromatosis patients and their families with information about the disorder and helps them in finding medical, social, and genetic counseling. The Foundation also promotes and supports scientific research on the cause, prevention, and treatment of neurofibromatosis. It acts as an information source for physicians and health workers in the field. The fopundation also funds and manages a number of international collaborative efforts for NF scientists, NF clinics, NF databases, and NF mutation searches.

The Foundation publishes an information booklet for patients and families, a question-and-answer pamphlet, an information booklet about the child with neurofibromatosis type 1 (NF1), an information booklet about the adolescent with NF1, and an information booklet about neurofibromatosis type 2 (NF2), a booklet on NF and learning disabilities, and a booklet for teachers. Serial publications include a newsletter, quarterly; research newsletter, quarterly. The Foundation also has an extensive mailorder bookstore through which most texts on NF are available. Publications are available in English, French (Swiss or Belgian ), Spanish, Portugese, Dutch , Chinese, Vietnamese, Arabic, Greek, Swedish , Italian, and Turkish. Chapters are also available in many areas of the U.S.A.

Click on the highlighted name to go to the National Neurofibromatosis Foundation WWW Homepage.

Neurofibromatosis, Inc.

8855 Annapolis Road Suite 110 
Lanham, , MD 20706-2924 
(301) 577-8984 (Voice) 
(800) 942-6825 (Toll-free) 
(301) 577-0016 (Fax)

Neurofibromatosis, Inc., is a nonprofit organization that provides individuals and families affected by neurofibromatosis and related disorders information on the disease, referrals to physicians and other service providers, and peer counseling. The organization also serves professionals and will respond to mail, telephone, and in-person inquiries. A 24-hour message line is available, and service is extended through the weekend with the help of volunteer staff. Neurofibromatosis, Inc., maintains a database of resources and information on the care of the disease; sponsors seminars and workshops; and provides books, pamphlets, posters, and other related materials. Some publications are available in Spanish. The organization also promotes and supports research in Neurofibromatosis and related conditions.

Publications The organization provides books, pamphlets, posters, and other related materials--some of which are available in Spanish. Serial publication: Neurofibromatosis Ink (newsletter), quarterly.

Self-Help for Hard of Hearing People Inc. (SHHH)

7910 Woodmont Ave., Ste. 1200
Bethesda, MD 20814
Voice: (301) 657-2248
TDD: (301) 657-2249

SHHH Australia

1334 Pacific Highway
Turramurra, NSW 2074
Voice: (02) 449-9144

Tinnitus Association of Canada

23 Ellis Park Road
Toronto, ON M6S 2V4
(416) 762-1490

Back to the MGH Cranial Base Center Homepage for more online information on CPA tumors

To the MGH Neuro-oncology Homepage for online information about brain tumors

To the MGH Neurogenetics Homepage formore information on NF-2.

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    Disclaimer: The information and reference materials contained herein is intended solely for the information of the reader. It should not be used for treatment purposes, but rather for discussion with the patient's own physician. Copyright
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