Neurofibromatosis
- National
Neurofibromatosis Foundation, Inc.
- 95 Pine Street, 16th Floor
- New York, NY 10005
- Phone: 212 344-6633 or toll free: 1-800 323-7938
- Contact: Peter Bellermann
- Fax: 212 747-0004
- E-mail: nnff@nf.org
- Web page: www.nf.org
or www.neurofibromatosis.org
-
- Kids' Council (ages 6-17) includes
pen pal "buddies," a drawing contest, and a newsletter. To join,
e-mail NNFF@aol.com,
or write to NNFF c/o Kids' Council (1-800-323-7938 x23)
- USA State Chapters
- Non-English Pages (Arabic, French, Flemish,
Portugese, Bulgarian, Danish, German, Italian, Finnish, Spanish)
- Neurofibromatosis, Inc.
- USA
- 8855 Annapolis Rd
- Lanham, MD 20706-2924
- Phone: (800) 942-6825 or (301) 577-8984
- Contact: Mary Ann Wilson
- Fax: (301) 577-0016
- Web site: www.nfinc.org/
- E-mail: NFInc1@aol.com
- State
and Regional Chapters and Affiliates
The
Neurofibromatosis Association UK, A Brief History of
Neurofibromatosis
British Columbia Neurofibromatosis
Foundation, Canada, Helping Your Child Cope with
Neurofibromatosis
-
- Acoustic
Neuroma Association
- 600 Peachtree Pkwy, #108, Cumming,
GA 30041-6899
- Phone: 770.205.8211, Fax 770.205.0239
- Web site: anausa.org
- E-mail: anausa@aol.com
- Frequently
asked questions
- Glossary
of terms
- Local
support Groups
- Regional / local groups:
- Neurofibromatosis, Inc. KS
- PO Box 1792
- Hutchinson, KS 67504-1792
- Phone: (316) 669-8453 Contact: Nancy Prieb
- National Neurofibromatosis
- 1132 Timberline Dr
- Fenton, MO 63026
- Phone: (314) 343-1240
- Kansas City Neurofibromatosis Support Group
- 8806 Birch
- Prairie Village, KS 66207
- Contact: Lester Palmer
- E-mail: legbomb@aol.com
- Summer
Camp for Teens
- Fran Morris, NNFF
- 95 Pine St.; 16th Floor
- NY, NY 10005
- Phone: 800.323.7938
- E-mail: nnff@aol.com
- August 1-11, 1998, Utah, $525 per camper + transportation,
limited to 40
- Peripheral
Neurofibromatosis, Virtual Hospital, University of
Iowa
- Neurofibromatosis
(Type I, NF1), Von Recklinghausen Disease, OMIM (online Mendelian Inheritance
in Man)
- Neurofibromatiosis
Clinic, Neurogenetics, Massachusetts General Hospital
- Neurofibromatosis
Resources, Neurosurgery, Massachusetts General Hospital,
extensive resources including personal pages of people with neurofibromatosis
- Neurofibromatosis
Clinics Association, Inc. - Pittsburgh, Pennsylvania,
basics of NF - What is Neurofibromatosis (NF)?
- Photographs,
demonstrate different visible aspects of Neurofibromatosis,
Type 1
- Neurofibromatosis,
National Health Information Center
- Support
organizations and internet support groups, NF
- Usenet
newsgroups, NF
- The
Neurofibromatoses - The March of Dimes
- Was
ist Neurofibromatose (Deutsch / German)
- Las
Neurofibromatosis,
spanish, National Institute of Neurological Disorders and Stroke
Children and Adolescent Issues
NF-2
and Acoustic Neuroma (Central Neurofibromatosis
or Bilateral Acoustic Neurofibromatosis, a cause of Acoustic Neuroma,
or Vestibular Schwannoma)
Also See:
- National
organizations, information on genetic conditions or
birth defects
- Neurofibromatosis
Webring
- Center
for Neurofibromatosis Therapy in Nürnberg (English
or Deutsch) laser surgery for the cosmetic removal of external NF tumors
- The
Elephant Man's Mistaken Identity - Joseph "John"
Cary Merrick had an extremely rare condition, Proteus Syndrome, not NF, as
had been assumed for many years. Article explains physical differences
between Proteus Syndrome and NF, with photograph of Mr. Merrick
- Proteus Syndrome
Information (sometimes confused with neurofibromatosis)
- Thirty Cats,
an online novel about NF, by Dina Roberts, NF, Inc.
- Living With
Genetic Disorder : The Impact of Neurofibromatosis I, JAblon,
Aug 1999, Greenwood PublishingGroup, Auburn House, includes social, educational,
and economic impact of living with neurofibromatosis type I (NFI)
To locate a genetic
counselor or clinical geneticist
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Genetics Education Center
University of Kansas Medical Center © 1995-2012
Debra Collins, M.S. CGC, Genetic Counselor, dcollins@kumc.edu
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