ORGANIZATIONS - ALPHABETICAL

Throughout the various tapics on this site are scattered organizations, book recommendations and more. You will always find the fullest information on the page relating to the specific topic or condition, but here you can find all the organizations from across our pages in one master list. We hope that this will help make it easier for you to find connections to their valuable resources.

Ability Online Support Network
Toronto, Ontario, Canada
(416) 650-6207
Web: http://www.ablelink.org

AboutFace
Anna Pileggi, Executive Director
123 Edward St., Ste. 1003
Toronto, ON M5G 1E2, Canada
(800) 665-FACE (3223)
E-mail: info@aboutfaceinternational.org
Web: http://www.aboutfaceinternational.org

AboutFace USA
Debbie Oliver, Executive Director
PO Box 158, South Beloit, IL 61080
Phone: (888) 486-1209, (702) 769-9264
Fax: (702) 341-5351
E-mail: info@aboutfaceusa.org
Web: http://www.aboutfaceusa.org/ and http://www.cleftadvocate.org

Acoustic Neuroma Association
Lois White, Executive Director
600 Peachtree Pkwy., Ste. 108
Cumming, GA 30041-6899
(770) 205-8211 - Phone
(770) 205-0239 - Fax
E-mail: anausa@aol.com
Web: http://www.anausa.org

Adenoid Cystic Carcinoma Foundation (ADEN-CYST)
Nancy Whitman, Co-Chair
Monroe, MI
Web: http://www.paonline.com/knippd/acc/

American Anaplastology Association
MaryAnne BoBrow, Executive Director
6060 Sunrise Vista Dr., Ste. 1300
Citrus Heights, CA 95610-7098
(916) 722-8168
E-mail: aaa@anaplastology.org
Web: http://www.anaplastology.org

American Brain Tumor Association
2720 River Rd., Des Plaines, IL 60018
(800) 886-2282 - Patient Line
(847) 827-9910
E-mail: info@abta.org
Web: http://www.abta.org

American Chronic Pain Association
P.O. Box 850, Rocklin, CA 95677
(800) 533-3231
E-mail: acpa@packbell.net
Web: http://www.theacpa.org

American Society for Deaf Children (ASDC)
P.O. Box 3355, Gettysburg, PA 17325
(800) 942-2732
(717) 334-7922 TTY
E-mail: asdcl@aol.com
Web: http://www.deafchildren.org

Apert Web Page
Don & Cathie Sears
P.O. Box 2571, Columbia, SC 29202
(803) 732-2372
E-mail: catndon@apert.org
Web: http://www.apert.org

Cleft Palate Foundation (CPF)
Nancy Smyth, Director
1504 East Franklin St., Ste. 102
Chapel Hill, NC 27514-2884
(919) 933-9044 - 24 hour cleft line for parents
(800) 24-CLEFT
E-mail: info@acpa-cpf.org
Web: http://www.acpa-cpf.org

American Self-Help Group Clearinghouse
Director, Ed Madara, Cedar Knolls, NJ
(973) 326-6789
Web: http://www.selfhelpgroups.org

Basal Cell Carcinome Nevoid Syndrome
BCCNS Life Support Network
Kristi Schmitt-Burr, Director
P.O. Box 321, Burton, OH 44021
(440) 635-0078
(866) 834-1895 - Toll Free Patient Line
E-mail: info@bccns.org
Web: http://www.bccns.org

Birth Defect Research for Children, Inc.
Betty Mekdeci, Executive Director
930 Woodcock Rd., Ste. 225
Orlando, FL 32803
(407) 895-0802
Web: http://www.birthdefects.org

Brain Injury Association of America
8201 Greensboro Dr., Ste. 611
McLean, VA 22102
(703) 761-0750
Web: http://www.biausa.org

Brain Tumor Society
124 Watertown St., Ste. 3-H
Watertown, MA 02472
(617) 924-9997 or (800) 770-8287
E-mail: info@tbts.org
Web: http://www.tbts.org

Candid Camera - Laughter Therapy
Laughter Therapy
Box 827
Monterey, California 93942
Web: http://candidcamera.com/cc7/cc7.html

Candlelighters Childhood Cancer Foundation
P.O. Box 498, Kensington, MD 20895-0498
(800) 366-2223 - Parent Hotline
(301) 962-3520 - All other calls
E-mail: @candlelighters.org
Web: http://www.candlelighters.org

Children's Cancer Association
7524 SW Macadam, Ste. B
Portland, OR 97219
(503) 244-3141
E-mail: office@e-cca.org
Web: http://www.ChildrensCancerAssociation.org

Children's Craniofacial Association
Charlene Smith
13140 Coit Rd., Ste. 307, Dallas, TX 75240
(214) 570-9099 or (800) 535-3643
E-mail: contactCCA@ccakids.com
Web: http://www.ccakids.com

Children's Tumor Foundation
95 Pine St., 16th Floor, New York, NY 10005
(212) 344-6633 or (800) 323-7938
E-mail: info@ctf.org
Web: http://www.ctf.org

Cleft Advocate
P.O. Box 751112, Las Vegas, NV 89136-1112
(702) 769-9264
E-mail: debbie@cleftadvocate.org
Web: http://www.cleftadvocate.com

Craniofacial Foundation of America
Terri Farmer
975 E Third St., Box 269
Chattanooga, TN 37403
(423) 778-9192 or (800) 418-3223
Web: http://www.craniofacialcenter.com

Crouzon Support Network
P.O. Box 1272, Edmonds, WA 98020
(425) 672-1697
E-mail: crouzons-owner@yahoogroups.com
Web: http://www.crouzon.org

Cultivating Connections
907 Harris Ave., Ste. 301
Bellingham, WA 98225
(360) 647-5120
E-mail: branchout@cultivatingconnections.com
Web: http://www.cultivatingconnections.com

Dinner Through a Straw
P.O. Box 332574, Murfreesboro, TN 37133
(800) 842-3841
E-mail: dinnerthroughastraw@yahoo.com
Web: http://www.dinnerthroughastraw.net

Face to Face of Indianapolis
Diane Wachendorff
506 Maxine Manor, Brownsburgh, IN 46112-1535
(317) 852-3676

FACES - The National Craniofacial Association
Lynne Mayfield, Director
P.O. Box 11082, Chattanooga, TN 37401
(423) 266-1632 or (800) 332-2373
E-mail: faces@faces-cranio.org
Web: http://www.faces-cranio.org

Fathers Network of Washington
James May, Director
Kindering Center WSFN
Bellevue, WA
(425) 747-4004 ext. 4286
E-mail: jmay@fathersnetwork.org
Web: http://www.fathersnetwork.org

Forward Face: Helping Children with Craniofacial Conditions
317 East 34th St., Ste. 901A, New York, NY 10016
(212) 684-5860 or (800) 393-FACE
Web: http://www.forwardface.org

Foundation for Faces of Children
258 Harvard St., #367, Brookline, MA 02446-2904
(617) 355-8299
E-mail: info@facesofchildren.org
Web: http://www.facesofchildren.org

Foundation for Ichthyosis and Related Skin Types (F.I.R.S.T.)
1601 Valley Forge Rd., Lansdale, PA 19446
(215) 631-1411 or (800) 545-3286
E-mail: info@scalyskin.org
Web: http://www.scalyskin.org

Foundation for Nager and Miller Syndromes
DeDe Van Quill, Director
13210 SE 342nd St., Auburn, WA 98092
(800) 507-FNMS
E-mail: ddfmns@aol.com
Web: http://www.nagerormillersynd.com/

Freeman-Sheldon Parent Support Group
Joyce Dolcourt
509 E Northmont Way
Salt Lake City, UT 84103-3324
(801) 364-7060
E-mail: fspsg@mail.burgoyne.com
Web: http://www.fspsg.org

Genetic Alliance
Mary Davidson, Executive Director
4301 Connecticut Ave. NW, Ste. 404
Washington, DC 20008-2369
(202) 966-5557
(800) 336-GENE - Help Line
(800) 232-1370 - Partnership
E-mail: information@geneticalliance.org
Web: http://www.geneticalliance.org

Genetic and Rare Diseases Information Center
P.O. Box 8126
Gaithersburg, MD 20898-8126
(888) 205-2311 (M-F, 12 p.m. - 6 p.m. EST)
(888) 205-3223 TTY
E-mail: gardinfo@nih.gov
Web: http://www.genome.gov/page.cfm?pageID=10000409

Goldenhar Syndrome Support Network
Barb Miles
9325 163 St., Edmonton, Alberta T5R 2P4 Canada
E-mail: support@goldenharsyndrome.org
Web: http://www.goldenharsyndrome.org

Hemangioma Hope
Cindy Dougan, North East, PA
(814) 898-1054
E-mail: cdouganHH@aol.com
Web: http://www.members.tripod.com/~Michelle_G/HHopeN.html

Image Enhancement and Support Center
12300 Montecito Rd., #49
Seal Beach, CA 90740
(562) 431-6276
E-mail: bquayle@verizon.net

Institute for Family-Centered Care
Beverley Johnson, President
7900 Wisconsin Ave., Ste. 405, Bethesda, MD 20814
(301) 652-0281
E-mail: institute@iffcc.org
Web: http://www.familycenteredcare.org

March of Dimes Resource Center
1275 Mamaroneck Ave., White Plains, NY 10605
(888) 663-4637 (9 a.m. - 7 p.m., EST)
011-914-997-4765 - International
Web: http://www.marchofdimes.com

Maternal and Child Health Library
2115 Wisconsin Ave. NW, Ste. 601
Washington, DC 20007-2292
(202) 784-9770
E-mail: mchlibrary@ncemch.org
Web: http://www.mchlibrary.info

Moebius Syndrome Foundation
Vicki McCarrell, President
P.O. Box 147, Pilot Grove, MO 65276
(660) 834-3406
E-mail: vmccarrell@mid-mo.net
Web: http://www.moebiussyndrome.com

National Alopecia Areata Foundation
P.O. Box 150760, San Rafael, CA 94915-0760
(415) 472-3780
E-mail: info@naaf.org
Web: http://www.naaf.org

National Brain Tumor Foundation
22 Battery St., Ste. 612
San Francisco, CA 94111-5520
(800) 934-CURE - Patient Line
(415) 834-9970 - Office Line
E-mail: nbtf@braintumor.org
Web: http://www.braintumor.org

National Cancer Institute
NCI Public Inquiries Office, Ste. 3036A
6116 Executive Blvd., MSC8322
Bethesda, MD 20892-8322
(800) 4-CANCER
Web: http://www.cancer.gov

National Chronic Pain Outreach Association, Inc. (NCPOA)
P.O. Box 274, Millboro, VA 24460
(540) 862-9437
E-mail: ncpoa@cfw.com
Web: http://www.chronicpain.org

National Coalition Against Domestic Violence
P.O. Box 18749, Denver, CO 80218
(303) 839-1852
E-mail: abeau@ncadv.org
Web: http://www.ncadv.org

National Coalition for Cancer Survivorship (NCCS)
Ellen Sovall, Executive Director
1010 Wayne Ave., Ste. 770
Silver Spring, MD 20910
(301) 650-9127
(877) 622-7937 - Publications
E-mail: info@canceradvocacy.org
Web: http://www.canceradvocacy.org

National Dissemination Center for Children With Disabilities (NICHCY)
P.O. Box 1492, Washington, DC 20013
(800) 695-0285 (9:30 a.m. - 6:30 p.m., EST)
E-mail: nichcy@aed.org
Web: http://www.nichcy.org

National Fibromyalgia Partnership, Inc.
P.O. Box 160, Linden, VA 22642- 0160
(866) 725-4404
E-mail: mail@fmpartnership.org
Web: http://www.fmpartnership.org

National Foundation for Facial Reconstruction
New York, NY
(212) 263-6656
E-mail: NFFR@earthlink.net
Web: http://www.nffr.org

National Institute on Deafness and Other Communication Disorders
National Institutes of Health
31 Center Drive, MSC 2320
Bethesda, MD USA 20892-2320
E-mail: nidcdinfo@nidcd.nih.gov
Web: http://www.nidcd.nih.gov

National Institute of Dental and Craniofacial Research (NIDCR)
Bethesda, MD 20892-2190
(301) 496-4261
E-mail: nidcrinfo@mail.nih.gov
Web: http://www.nidcr.nih.gov

National Organization for Albinism and Hypopigmentation (NOAH)
P.O. Box 959, East Hampstead, NH 03826-0959
(800) 473-2310
E-mail: webmaster@albinism.org
Web: http://www.albinism.org

National Organization for Rare Disorders (NORD)
55 Kenosia Ave., PO Box 1968
Danbury, CT 06813-1968
(203) 744-0100 or (800) 999-6673
E-mail: orphan@rarediseases.org
Web: http://www.rarediseases.org

National Organization on Disability (NOD)
910 Sixteenth St. NW, Ste. 600
Washington, DC 20006
(202) 293-5960
E-mail: ability@nod.org
Web: http://www.nod.org

National Vitiligo Foundation
611 South Fleishel Ave., Tyler, TX 75701
(903) 531-0074
E-mail: vitiligo@tmfhs.org
Web: http://www.nvfi.org/

Neurofibromatosis, Inc. (NFI)
P.O. Box 18246, Minneapolis, MN 55418
(301) 918-4600 or (800) 942-6825
(410) 461-5213 - TDD
E-mail: nfinfo@nfinc.org
Web: http://www.nfinc.org

Northeast VCFS Support Group
2 Lansing Dr., Salem, NH 03079
(603) 898-6332
E-mail: MLADJA@aol.com

Oral Cancer Foundation
3419 Via Lido, #205
Newport Beach, CA 92663
(949) 646-8000
E-mail: info@oralcancerfoundation.org
Web: http://www.oralcancerfoundation.org/

Parents Helping Parents, Inc.
3041 Olcott St., Santa Clara, CA 95054
(408) 727-5775
E-mail: general@php.com
Web: http://www.php.com

Phoenix Society for Burn Survivors, Inc.
Amy Acton, Executive Director
2153 Wealthy St. SE, #215
East Grand Rapids, MI 49506
(616) 458-2773 or (800) 888-BURN (2876)
E-mail: info@phoenix-society.org
Web: http://www.phoenix-society.org

Pierre Robin Network
P.O. Box 3274, Quincy, IL 62305
E-mail: info@pierrerobin.org
Web: http://www.pierrerobin.org

Prescription Parents, Inc.
45 Brentwood Circle, Needham, MA 02492
(781) 431-1398
Web: http://www.samizdat.com/pp1.html

Proteus Syndrome Foundation
4915 Dry Stone Dr.
Colorado Springs, CO 80918
Web: http://www.proteus-syndrome.org

Romberg's Connection
T. Hildebrand, Chicago Ridge, IL
E-mail: rombergs@hotmail.com
Web: http://www.geocities.com/HotSprings/1018

Rotary International Thousand Smiles Foundation
P.O. Box 606, Bonita, CA 91908-0606
(619) 470-2885
E-mail: information@thousandsmiles.org
Web: http://www.thousandsmiles.org/

Scleroderma Foundation
12 Kent Way, Ste. 101, Byfield, MA 01922
(978) 463-5843 or (800) 722-HOPE (4673)
E-mail: sfinfo@scleroderma.org
Web: http://scleroderma.org

Self Help for the Hard of Hearing (SHHH)
7910 Woodmont Ave., Ste. 1200
Bethesda, MD 20814
(301) 657-2249 - TTY
(301) 657-2248 - Voice
E-mail: info@hearingloss.org
Web: http://www.shhh.org

Sjogren's Syndrome Foundation
8120 Woodmont Ave., Ste. 530, Bethesda, MD 20814
(301) 718-0300 or (800) 475-6473
E-mail: SSF@sjogrens.org
Web: http://www.sjogrens.org

Specialized Training of Military Parents (STOMP)
6316 S 12th St., Tacoma, WA 98465
(800) 5-PARENT or (253) 565-2266 (Overseas call collect)
E-mail: rfullerton@washingtonpave.com
Web: http://www.stompproject.org

Stickler Involved People
International Group Coordinator
KT12 2AZ England
011-441-932-229421

Stickler Involved People (US)
U.S. Coordinator, Pat Houchin
15 Angelina Dr., Augusta, KS 67010
(316) 775-2993
E-mail: sip@sticklers.org
Web: http://www.sticklers.org

Sturge-Weber Foundation
Karen Ball
P.O. Box 418, Mount Freedom, NJ 07970
(800) 627-5482
E-mail: swf@sturge-weber.com
Web: http://www.sturge-weber.com

Support for People with Oral and Head and Neck Cancer (SPOHNC)
Nancy Leupold
P.O. Box 53
Locust Valley, NY 11560-0053
(800) 377-0928 or (516) 759-5333
E-mail: info@spohnc.org
Web: http://www.spohnc.org

SupportWorks
Joal Fischer, Director
500 East Morehead St., Ste. 222
Charlotte, NC 28202-2694
(704) 331-9500
E-mail: director@supportworks.org
Web: http://www.supportworks.org

TMJ Association Ltd.
P.O. Box 26770, Milwaukee, WI 53226-0770
(262) 432-0350
E-mail: info@tmj.org
Web: http://www.tmj.org

Treacher Collins Connection
P.O. Box 156, Boston, MA 02131
(704) 545-1921
E-mail: tom@tccconnection.org or
judy@tccconnection.org
Web: http://www.tcconnection.org

Trigeminal Neuralgia Association
925 NW 56th Terrace, Suite C, Gainesville, FL 32605
(352) 331-7009 or (800) 923-3608
E-mail: tnanational@tna-support.org
Web: www.endthepain.org

Vascular Birthmark Foundation
Linda Shannon, Director
P.O. Box 106, Latham, NY 12110
(877) 823-4646
Web: http://www.birthmark.org

Velo-Cardio-Facial Syndrome Educational Foundation
P.O. Box 874, Milltown, NJ 08850
(732) 238-8803 or (866) 823-7335
E-mail: info@vcfsef.org
Web: http://www.vcfsef.org

Von Hippel Lindau Family Alliance
171 Clinton Rd., Brookline, MA 02445-5815
(800) 767-4VHL
E-mail: info@vhl.org
Web: http://www.vhl.org

Wegener's Granulomatosis Association International
P.O. Box 28660
Kansas City, MO 64188-8660
(800) 277-9474
E-mail: wga@wgassociation.org
Web: http://www.wgassociation.org

Zip-N-Squeeze
Susan Beaudette, R.N.
P.O. Box 575
Yorba Linda, CA 92885-0575
(714) 997-7146
E-mail: zipnsqueeze@earthlink.net
Web: http://www.zip-n-squeeze.com

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