|
Angelman
Syndrome |
Apert
Syndrome |
- Angelman Syndrome
Foundation
- 414 Plaza Dr.,
Ste. 209
- Westmont, IL
60559-5507
- www.vhrm.uvdf.rfu/sdg
|
- Apert Support
and Information Network
- PO Box 1184
- Fair Oaks, CA
95628
- (650)
961-1092(voice/fax)
- apertnet@ix.netcom.com
|
- Canadian Angelman
Syndrome Society
- PO Box 37
- Priddis, AB CON
TOL 1W0
- (403)
931-2415(voice/fax)
|
- Apert Syndrome
Pen Pal Network
- PO Box 115
- Providence, RO
02901
- (401) 421-9076
|
|
- Apert Syndrome
Support Group
- 8708 Kathy St.
- St. Louis,MO 63126
- (314) 965-3356
|
|
Apraxia |
Asthma
& Allergy |
- National
Organization for Apraxia and Dyspraxiia
- 7675 Charter Oaks
Dr.
- Pensacola, FL
32514
- (904) 478-4895
(voice/fax)
- (904) 494-1444
(TTY)
- dyspraxia@aol.com
|
- Allergy/Asthma
Information Association
- 30 Eglinton Ave.
W., Ste. 750
- Mississauga, ON
CAN L5R 3E7
- (905) 712-2242
- (905) 712-2265
(fax)
|
|
- Asthma and Allergy
Foundation of America
- 1125 15th
St. NW, Ste. 502
- Washington, DC
20005
- (800) 727-8462
- (202) 466-7643
- (202) 466-8940
(fax)
- www.aafa.org
- info@aafa.org
|
|
Attention
Deficit Disorder |
Autism |
- CHADD- Canada,
Inc.
- Children and
Adults with Attention Deficit Disorder
- 1376 Bank St.,
Ste. 214
- Ottawa, ON CAN K1H
1B3
- (613) 631-1209
- (613) 257- 1563
(fax)
- CHADD
|
- Autism Society of
America
- 7910 Woodmont
Ave., Ste. 650
- Bethesda, MD 20814
- (800) 328-8476
- (301) 657-0881
- (301) 657-0869
(fax)
- www.autism-society.org/
|
- CHADD: Children
and Adults with Attention Deficit Disorders
- 499 NW 70th
Ave., STE. 101
- Plantation, FL
33317
- (800) 233-4050
- (305) 587-3700
- (305) 587- 4599
(fax)
- www.Chadd.org
- national@Chadd.org
|
- Autism Society of
Canada
- 29 Yorkville Ave.,
#202
- Toronto, ON CAN
M5R 1C4
- (416)922-0302(voice/fax)
- (416) 922-1032
(fax)
|
- National ADD
Association
- PO Box 972
- Mentor, OH 44061
- (800) 487-2282
- (440) 350-9595
- (440)
350-0223(fax)
- www.add.org
- NATLADDA@aol.com
|
|
|
Balance
Disorders & Dizziness |
Bell’s
Palsy |
- EAR Foundation
- 1817 Patterson St.
- Nashville, TN
37203-2110
- (800)545-4327 (voice,TTY)
- (615)329-7807
- (615) 329-7935
(fax)
- www.theaarfound.org
- tyjear@aol.com
|
- Bell’s Palsy
Research Foundation
- 9121 E. Tanque
Verde, Ste. 105-286
- Tuscon, AZ 85749
- (520)749-4649
- (520)749-0489
- BellsPalsy@aol.com
|
|
Bereavement
Support |
Bone
Marrow Transplant |
|
Center for Loss in
Multiple Birth
PO Box 1064
Palmer, AK 99645-1064
(907) 746-4614
climb@pabox.alaska.net
|
- BMT Newsletter
- 1985 Spruce Ave.
- Highland Park, IL
60035
- (847) 831-1913
- (847)
831-1943(fax)
- www.bmtnews.org
- bmtsnews@transit.nyser.net
|
- Compassionate
Friends
- PO Box 3696
- Oak Brook, IL
60522-3696
- (630) 990-0010
- (630)
990-0246(fax)
- www.compassionatefriends.org
- tcf_national@prodigy.com
|
|
|
Bowel
Dysfunction |
Brain
Injury |
- International
Foundation
- for Functional
- Gastrointestinal
Disorders (IFFGD)
- PO Box 17864
- Milwaukee, WI
43217
- (888) 964- 2001
- (414)964-1799
- (414)964-7176(fax)
- www.iffgd.org
- IFFGD@iffgd.org
|
- Brain Injury
Association
- 105 N. Alfred St.
- Alexandria, VA
22314
- (800)444-6443
(family help line)
- (703) 236-6000
- (703)236-6001(fax)
- www.biausa.org
|
|
Brain
Tumors |
Cancer |
- American Brain
Tumor Association
- 2720 River Rd.,
Ste. 146
- Des Plaines, IL
60018
- (800)886-2282
- (847) 827-9910
- (847)827-9918
(fax)
- www.abta.org
- info@abta.org
|
- American Cancer
Society
- 1599 Clifton Rd.
NE
- Atlanta, GA
30329-4251
- (800) 227-2345
- (404)320-3333
- (404)982-3676
- www.cancer.org
|
- Brain Tumor
Foundation of Canada
- 650 Waterloo St.,
Ste. 100
- London, ON CAN N6B
2R4
- (519) 642-7755
- (519)642-7192
(fax)
- Brain
Tumor Foundation of Canada
- eallman1@juno.com
|
- Canadian Cancer
Society
- 10 Alcorn Ave.,
Ste 200
- Toronto, ON CAN
M4V 3B1
- (426) 961-7223
- (416)982-3676
(fax)
- www.cancer.ca
- Lfernand@cancer.ca
|
|
Cerebral
Palsy |
Cleft
Palate |
- Ontario Federation
for Cerebral Palsy
- 1630 Lawrence Ave.
W., Ste. 104
- Toronto, ON CAN
M6L 1C5
- (416) 244-8003
- (414)244-6543(fax)
- www.ofcp.on.ca
- Ofcp@ofcp.on.ca
|
- Cleft Palate
Foundation
- 1829 E. Franklin
St., Ste. 1022
- Chapel Hill, NC
27514
- (800) 242-5338
- (919) 933-9044
- (919)933-9604(fax)
- www.cleft.com
- cleftline@aol.com
|
- United Cerebral
Palsy Associations
- 1660 L St. NW,
Ste.700
- Washington, DC
20036-5602
- (800)872-5827
- (202)973-7197(TTY)
- (202)776-0406
- (202)776-0414(fax)
- www.ucpa.org
- ucpainc@aol.com
|
|
- The Cerebral Palsy
Network
- 1448 Goldenrod
- Olympia, Wa 98513
- (509) 453-4197
- cerebralpalsynet2003@msn.com
- The
Cerebral Palsy Network
|
|
|
Craniofacial
Disorders |
Cystic
Fibrosis |
- Children’s
Craniofacial Association
- PO Box 280297
- Dallas, TX 75228
- (800) 535-3643
- (972)994-9902
- (972)240-7607(fax)
- www.masterlink.com\children
- dnkm90@prodigy.com
|
- Canadian Cystic
Fibrosis Foundation
- 2221 Yonge St.,
Ste. 601
- Toronto, ON CAN
M4A 2B4
- (800) 378-2233
(Canada only)
- (416) 485- 9149
- (416)485-0960(fax)
- www.ccff.ca/~cfwww/index.html
|
|
Cystinosis |
Deaf-Blind |
- Cystinosis
Foundation
- 2516 Stockbridge
Dr.
- Oakland, CA 94611
- (800) 392- 8458
- (510)482-8119
- www.cystinosisfoundation.ucsd.edu
- jd2jptz@qmis.net
|
- American
Association of the Deaf-Blind
- 814 Thayer Ave.,
Ste. 302
- Silver Spring, MD
20910
- (301)588-6545(TTY
only)
- (301) 588-8705
(fax)
|
|
- The Canadian
Defblind and Rubella Association
- c/o The W.Ross
Macdonald School
- 350 Brant Ave.
- Brantford, ON CAN
N3T 3J9
- (519) 754-0729
- (519) 754-5400
(fax)
|
|
Down
Syndrome |
Dyslexia |
- Canadian Down
Syndrome Society
- 811 14th
St. NW
- Calgary, AB CAN
T2N 2A4
- (403) 270-8500
- (402)270-8291(fax)
- www.home./ican.net/cdss/index.html
- cdss@ican.net
|
- Recording for the
Blind & Dyslexic
- 20 Roszel Rd.
- Princeton, NJ
08540
- (609) 452-0606
- (609) 520- 7990
(fax)
|
- National Down
Syndrome Congress
- 666 Broadway, 8th
Fl.
- New York, NY
10012-2317
- (800) 221-4602
- (212) 460-9330
- (212) 979-2873
(fax)
- www.ndss.org
- info@ndss.org
|
|
|
Dystonia |
Epilepsy |
- Dystonia Medical
Pesearcy Foundation
- One E Wacker Dr.,
Ste. 2430
- Chicago, IL
60601-1905
- (312) 755-0198
- (312) 803-
0138(fax)
- www.dystonia-foundation.org/
- dystonia@dystonia-foundation.org/
|
- American Epilepsy
Society
- 638 Prospect Ave.
- Hartford, CT
06105-4240
- (860) 586-7505
- (860)
586-7550(fax)
- www.aesnet.org
- info@aesnet.org
|
- Dystonia Medical
Research Foundation-Canada
- 116-230 Heath St.
W.
- Toronto, ON CAN
M5P 1N8
- (800) 361-8061 (Canada
only)
- (416) 487-8226
- dystfdtn@aol.com
|
- Epilepsy Canada
- 1470 Peel St.,
Ste. 745
- Montreal, PQ CAN
H3a 1T1
- (514) 845- 7855
- (524) 845-7866
(fax)
- www.generation.net/~epilepsy.ca
|
|
Erb
Palsy |
Food
Allergy |
- Brachial Plexus/Erb’s
Palsy
- Support and
Informational
- Network, Inc.
- PO Box 23
- Larsen, WI 54947
- (920) 836-9955
- (920) 836- 9587
- www.customforum.com/nationalbpi
- nationalbpi@powernetonline.com
|
- The Food Allergy
Network
- 10400 Eaton Pl.,
Ste 108
- Fairfax, Va
22030-2208
- (703) 691-3179
- (703) 691-
2713(fax)
- www.foodallerergy.org
- fan@worldweb.net
|
|
Fragile
X Syndrome |
Gastroesophageal
Reflux |
- National Fragile X
Foundation
- 1441 York St.,
Ste. 303
- Denver, CO 80206
- (800) 688-8765
- (303) 333-6155
- (303)
333-4369(fax)
- www.infxf.org
- natfragx@ix.netcom.com
|
- Pediatric/Adolescent
- Gastroesophageal
Reflux
- Association Inc.
(PAGER)
- PO Box 1153
- Germantown, MD
20875-1153
- (301)601-9541
- gergroup@aol.com
|
|
Gastrointestinal
Disorders |
Genetic
Disorders |
- The Oley
Foundation
- 214 Hun Memorial
- Albany Medical
Center, a-23
- Albany, NY
12208-3478
- (800) 776-OLEY
(6539)
- (518) 262-5079
- (518) 262-5528
(fax)
- www.wizvax.net/oleyfdn
- joan_bishop@ccgateway.amc.edu
|
- Alliance of
Genetic Support Groups
- 4301 Connecticut
Ave. NW, Ste.404
- Washington, DC
20008
- (202)966-5557
- (292(966-8553(fax)
- www.geneticalliance.org
- info@geneticalliance.org
|
|
Hearing
Impairments |
Heart
Disorders |
- Alexander Graham
Bell
- Association for
the Deaf
- 3417 Volta Pl. NW
- Washington, DC
20007-2778
- (202) 337-522-
(voice/TTY)
- (202)
337-8314(fax)
- www.agbell.org
- agbell2@aol.com
|
- American Heart
Association
- 7272 Greenville
Ave
- Dallas, TX
75231-4596
- (800) 242-8721
- (214)706-1176
- (214)706-2139(fax)
- www.amhrt.org/
- inquire@amhrt.org
|
- The Canadian
Hearing Society
- 271 Spadina Rd.
- Toronto, ON CAN
M5R 2V3
- (416) 965-9595
- (416)964-0023
(TTY)
- (416)
928-2525(fax)
- www.chs.ca
- Info@chs.ca
|
- Children’s Heart
Association for Support and Education
- c/o Cardiac Clinic
- Hosp for Sick Children
- 555 University
Ave.
- Toronto, ON CAN
M5G 1X8
- (416) 813-5848
- (416)813-5582
|
|
Hemiplegia,
Alternating |
Holoprosencephaly |
- International
Foundation for Alternating Hemiplegia of Childhood
- 239 Nevada St.
- Redwood City, Ca
06460
- (650) 265- 5798
- laegan@aol.com
|
- The Carter Centers
for Brain
- Research in
Holoprosencephaly
- and related
malformations
- Texas Scottish
Rite Hospital for
- Children, Dept. Of
Neurology
- 2222 Welborn St.
- Dallas, TX 75219
- (800)421-1121
- (214)559-8411
- (214)559-7835(fax)
- inclegg@tsrh.org
- hpe@tsrh.org
|
|
Hospitality
Housing |
Hydrocephalus |
- Children’s
Hospital International
- 2202 Mt. Vernon
Ave., Ste. 3C
- Alexandria, VA
22301
- (800)2-4-CHILD
(242-4453)
- (703) 684-0330
- (703) 684-0226
(fax)
- www.chionline.org
- chiorg@aoil.com
|
- Guardians of
Hydrocephalus
- Research
Foundation
- 2618 Ave. Z
- Brooklyn, NY 11235
- (800) 458-8655
- (718) 743-4473
- (718) 743= 1171
(fax)
|
- National
Association of Hospital
- Hospitality Houses
- 4915 Auburn Ave.,
Ste. 303
- Bethesda, MD 20814
- (800) 543-9730
- (301) 961-5264
- (301)961-3094
- www.visit_usa.com/hhh
- nahhhcom@aol.com
|
- National
Hydrocephalus Foundation
- 12413 Centralia
Rd.
- Lakewood, CA
90715-1623
- (562) 402-3523
- (562)
924-6666(fax)
- www.oocities.org/HotSprings/Villia/2300
- hydrobrat@earthlink.net
|
|
Incontinence |
Kidney
Disorders |
- National
Association for Continence
- PO Box 8310
- Spartanburg, SC
29305
- (800)252-3337
- (864) 579-7900
- (864) 579-7902
- www.nafc.org
- sbrewer@nafc.org
|
- American
Association of Kidney Patients
- 100 S. Ashley Dr.,
Ste. 280
- Tampa, FL 33602
- (800) 749-2257
- (813)223-7099
- (813)223-0001(fax)
- aakpnat@aol.com
|
- Simon Foundation
for Continence
- PO Box 815
- Wilmett, IL 60091
- (800) 237-4666
- (847) 864-4913
- (847)
864-9758(fax)
|
- Canadian Pediatric
Kidney Disease Research Center
- 401 Smith Rd.
- Ottowa, ON Can K1H
8L1
- (613) 737-4098
- (613)
738-4800(fax)
- www.cpkdrc.org
|
|
Learning
Disabilities |
Leigh’s
Disease |
- Learning
Disabilities
- Association of
America
- 4156 Library Rd.
- Pittsburgh, PA
16234
- (412) 341-1515
- (412) 341-8077
- (412)
344-0224(fax)
- www.Idanati.org
- danatl@usaor.org
|
- National Leigh’s
Disease Foundation
- 608 E. Waldron
St., PO Box 2222
- Corinth, MS 38834
- (800) 819-2551
- (601)286-2551
- (601) 286-2551
(fax)
|
- Learning
Disabilities Association of Canada
- 323 Chapel St.,
Ste. 100
- Ottawa, ON CAN L1N
7Z2
- (613) 238-5721
- (613) 235-
5391(fax)
- www.educ.queensu.ca/~ida
- ldactaac@fox.nstn.ca
|
|
|
Leukemia |
Lissencephaly |
- Leukemia Research
Fund of Canada
- Attn: Chris Thomas
- 1110 Finch Ave.
W., Ste. 220
- Toronto, ON CAN
M3J 1T1
- (800) 268-2144
(Canada only)
- (416) 661-9541
- (416) 661-7799
(fax)
|
- Lissencephaly
Network
- 716 Autumn Ridge
Ln.
- Fort Wayne, IN
46804
- (219) 432-4310
(voice/fax)
- www.lissencephaly.org
- lta1@is2nyu.edu
|
- Leukemia Society
of America
- 600 Third Ave., 4th
Fl.
- New York, NY 10016
- (800) 955-4572
- (212) 573-8484
- (212) 450-8844
- (212) 856-9686
(fax)
- www.leukemia.org
|
- The Lissencephaly
Network, Inc.
- Canada Division
- 1549 Regent St.
- Regina, SK CAN S4N
1S1
- (306) 569-0146
- www.lissencephaly.org
|
|
Liver
Disorders |
Lung
Diseases |
- American Liver
Foundation
- 1425 Pompton Ave.
- Cedar Grove, NJ
07009
- (800) 223=0179
- (800)
GO-Liver(465-4837)
- (888)4-HEP-ABC
(443-7222)
- (201) 256-2550
- (201) 256-3214
(fax)
- www.liverfoundation.org
- webmail@liverfoundation.org
|
- American Lung
Association
- 1740 Broadway, 14th
Fl.
- New York, NY 10019
- (800) LUNG-USA
(586-4872)
|
- Canadian Liver
Foundation
- 365 Bloor St. E,
Ste. 200
- Toronto, ON CAN
M4Q 3L4
- (800)
563-5483(Canada only)
- (416) 964-1953
- (416)
964-0024(fax)
- www.liver.ca/
- clf@liver.ca
|
- Canadian Lung
Association
- Attn: Alana Fox
- 1900 City Park
Dr., Ste. 508
- Gloucester, ON CAN
K1J 1A3
- (613) 747-6776
- (613) 747- 7430
(fax)
- www.lung.ca
- Info@lung.ca
|
|
Microcephaly |
Multiple
Sclerosis |
- Microcephaly
Network
- 362 Jean Talon
- St. Vanier, ON CAN
K1L 6T9
- (613) 742-5936
- www.microcephaly.org
- amanda@inetdirect.com
|
- Multiple Sclerosis
Society of Canada
- 250 Bloor St. E.,
Ste 1000
- Toronto, ON CAN
M4W 3P9
- (800) 361-2985 (Canada
only)
- (416) 922-6065
- (416)
922-7238(fax)
- www.mssoc.ca
- info@mssoc.ca
|
|
- National Multiple
Sclerosis Society
- 733 3rd
Ave., 6th FL.
- New York, NY
10017-3288
- (800) 344-4867
- (212) 986-3240
- (212)986-7981(fax)
- www.nmss.org
- nat@nmss.org
|
|
Muscular
Dystrophy |
Neurological
Disorders |
- Duchenne Parent
Project
- 125 Marymount Ct.
- Middletown, OH
45042- 3755
- (800) 714- KIDS
(5437)
- (513) 424-7452
- (513) 425-9907
- www.parentdmd.org
- patfurlong@aol.com
|
- Association for
Comprehensive Neurotherapy
- 1128 Royal Palm
Beach Blvd. #283
- Royal Palm Beach,
FL 33411
- (561) 798-0472
- (561) 798-
9820(fax)
- www.latitudes.org
- acn@latitudes.org
|
|
- Making Headway
Foundation, Inc.
- 115 King St.
- Chappaqua, NY
10514-3460
- (914) 238-8384
- (914)
238-1693(fax)
|
|
Scoliosis |
Seizure
Disorders |
- National Scoliosis
Foundation
- 5 Cabot Place
- Stoughton, MA
01071
- (781) 341- 6333
- (617) 341-8333
- www.scoliosis.org
- scoliosis@aol.com
|
- Threshold-
Intractable
- Seizure Disorder
Support Group
- & Newsletter
- 2150 Highway 35,
Ste. 207C
- Sea Girt, NJ 08750
- www.efnj.com
- fsnj@aol.com
|
|
Stroke |
Matching
Resources |
- Heart and Stroke
Foundation of Canada
- 222 Queens St.,
Ste. 1402
- Ottawa, ON Can K1P
5V9
- (613) 569- 4361
- (613)241-3278
(fax)
|
- Association of
Birth Defect Children
- 930 Woodcock Rd.,
Ste. 225
- Orlando, Fl 32803
- (800) 313-2232(24
hour registry line)
- (407) 245-7035
- (407)
895-0824(fax)
- www.birthdefects.org
- abdc@birthdefects.org
|
- National Stoke
Association
- 96 Inverness Dr.
E, Ste. 1402
- Englewood CO
80112-5112
- (800) 787-6537
- (303) 649-9299
- (303) 649-9299
- (303)
649-1328(fax)
- www.stroke.org
- info@stroke.org
|
- Canadian
Organization for Rare Disorders (CORD)
- PO Box 814
- Coaldale, AB CAN
T1M 1M7
- (403) 345-3948
- (403) 345-4544
- www.bulli.com/~cord
- cord@bulli.com
|
|
- Easter Seal
Society
- 250 Ferrand Dr.,
Ste 200
- Don Millis, ON CAN
M3C 3P2
- www.easterseals.org
- info@easterseals.org
|
|
- MUMS
- Mother’s United
for Moral Support
- c/o Julie Gordon
- 150 Cousta Ct.
- Green Bay, WI
54301-1243
- (920) 336-5333
- (920)
339-0995(fax)
- MUMS
|
|
- National
Organization for Rare Disorders (NORD)
- 100 Rt. 37, PO Box
8923
- New Fairfield, CT
06812-8923
- (800) 999-6673
- (203)746- 6487
(fax)
- www.nord_rdb.com/~orphan
- orphan@rdb.com
|
