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| *~National Links~* Directory: Resource Center |
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Around CPN Resource Center |
Welcome to our National links page. We have provided you some links to National links that deal with Cerebral Palsy and/or its associated conditions. We are far from done with this page but wanted to provide you with a jump start. Angelman Syndrome Angelman Syndrome Foundation 414 Plaza Dr., Ste. 209 Westmont, IL 60559-5507 Canadian Angelman Syndrome Society PO Box 37 Priddis, AB CON TOL 1W0 (403) 931-2415(voice/fax) Apert Syndrome Apert Support and Information Network PO Box 1184 Fair Oaks, CA 95628 (650) 961-1092(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 National Organization for Apraxia and Dyspraxiia 7675 Charter Oaks Dr. Pensacola, FL 32514 (904) 478-4895 (voice/fax) (904) 494-1444 (TTY) Asthma & Allergy 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) Attention Deficit Disorder 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) www.tripod.com/~chaddcanadain-dex.html
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)
National ADD Association PO Box 972 Mentor, OH 44061 (800) 487-2282 (440) 350-9595 (440) 350-0223(fax) Autism Autism Society of America 7910 Woodmont Ave., Ste. 650 Bethesda, MD 20814 (800) 328-8476 (301) 657-0881 (301) 657-0869 (fax)
Autism Society of Canada `29 Yorkville Ave., #202 Toronto, ON CAN M5R 1C4 (416)922-0302(voice/fax) (416) 922-1032 (fax) Balance Disorders & Dizziness EAR Foundation 1817 Patterson St. Nashville, TN 37203-2110 (800)545-4327 (voice,TTY) (615)329-7807 (615) 329-7935 (fax) Bell’s Palsy Bell’s Palsy Research Foundation 9121 E. Tanque Verde, Ste. 105-286 Tuscon, AZ 85749 (520)749-4649 (520)749-0489 Bereavement Support Center for Loss in Multiple Birth PO Box 1064 Palmer, AK 99645-1064 (907) 746-4614 climb@pabox.alaska.net Compassionate Friends PO Box 3696 Oak Brook, IL 60522-3696 (630) 990-0010 (630) 990-0246(fax) Bone Marrow Transplant BMT Newsletter 1985 Spruce Ave. Highland Park, IL 60035 (847) 831-1913 (847) 831-1943(fax) Bowel Dysfunction International Foundation for Functional Gastrointestinal Disorders (IFFGD) PO Box 17864 Milwaukee, WI 43217 (888) 964- 2001 (414)964-1799 (414)964-7176(fax) Brain Injury Brain Injury Association 105 N. Alfred St. Alexandria, VA 22314 (800)444-6443 (family helpline) (703) 236-6000 (703)236-6001(fax) Brain Tumors American Brain Tumor Association 2720 River Rd., Ste. 146 Des Plaines, IL 60018 (800)886-2282 (847) 827-9910 (847)827-9918 (fax) Brain Tumor Foundation of Canada 650 Waterloo St., Ste. 100 London, ON CAN N6B 2R4 (519) 642-7755 (519)642-7192 (fax) www.oncolink.upenn.edu/disease/brain/btfc/btfcped.html Cancer American Cancer Society 1599 Clifton Rd. NE Atlanta, GA 30329-4251 (800) 227-2345 (404)320-3333 (404)982-3676 Canadian Cancer Society 10 Alcorn Ave., Ste 200 Toronto, ON CAN M4V 3B1 (426) 961-7223 (416)982-3676 (fax) Cerebral Palsy Ontario Federation for Cerebral Palsy 1630 Lawrence Ave. W., Ste. 104 Toronto, ON CAN M6L 1C5 (416) 244-8003 (414)244-6543(fax) 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) Cleft Palate Cleft Palate Foundation 1829 E. Franklin St., Ste. 1022 Chapel Hill, NC 27514 (800) 242-5338 (919) 933-9044 (919)933-9604(fax) Craniofacial Disorders Children’s Craniofacial Association PO Box 280297 Dallas, TX 75228 (800) 535-3643 (972)994-9902 (972)240-7607(fax) Cystic Fibrosis 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) Cystinosis Cystinosis Foundation 2516 Stockbridge Dr. Oakland, CA 94611 (800) 392- 8458 (510)482-8119 www.cystinosisfoundation.ucsd.edu Deaf-Blind 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 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 National Down Syndrome Congress 666 Broadway, 8th Fl. New York, NY 10012-2317 (800) 221-4602 (212) 460-9330 (212) 979-2873 (fax) Dyslexia Recording for the Blind & Dyslexic 20 Roszel Rd. Princeton, NJ 08540 (609) 452-0606 (609) 520- 7990 (fax) Dystonia Dystonia Medical Pesearcy Foundation One E Wacker Dr., Ste. 2430 Chicago, IL 60601-1905 (312) 755-0198 (312) 803- 0138(fax) dystonia@dystonia-foundation.org/ Dystonia Medical Research Foundation-Canada 116-230 Heath St. W. Toronto, ON CAN M5P 1N8 (800) 361-8061 (canada only) (416) 487-8226 Epilepsy American Epilepsy Society 638 Prospect Ave. Hartford, CT 06105-4240 (860) 586-7505 (860) 586-7550(fax) 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 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 Food Allergy The Food Allergy Network 10400 Eaton Pl., Ste 108 Fairfax, Va 22030-2208 (703) 691-3179 (703) 691- 2713(fax) Fragile X Syndrome National Fragile X Foundation 1441 York St., Ste. 303 Denver, CO 80206 (800) 688-8765 (303) 333-6155 (303) 333-4369(fax) Gastroesophageal Reflux Pediatric/Adolescent Gastroesophageal Reflux Association Inc. (PAGER) PO Box 1153 Germantown, MD 20875-1153 (301)601-9541 Gastrointestinal 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) Genetic Disorders Alliance of Genetic Support Groups 4301 Connecticut Ave. NW, Ste.404 Washington, DC 20008 (202)966-5557 (292(966-8553(fax) Hearing Impairments Alexander Graham Bell Association for the Deaf 3417 Volta Pl. NW Washington, DC 20007-2778 (202) 337-522- (voice/TTY) (202) 337-8314(fax) The Canadian Hearing Society 271 Spadina Rd. Toronto, ON CAN M5R 2V3 (416) 965-9595 (416)964-0023 (TTY) (416) 928-2525(fax) Heart Disorders American Heart Association 7272 Greenville Ave Dallas, TX 75231-4596 (800) 242-8721 (214)706-1176 (214)706-2139(fax) Children’s Heart Association for Support and Education c/o Cardiac Clinic Hosp forSick Children 555 University Ave. Toronto, ON CAN M5G 1X8 (416) 813-5848 (416)813-5582 Hemiplegia, Alternating International Foundation for Alternating Hemiplegia of Childhood 239 Nevada St. Redwood City, Ca 06460 (650) 265- 5798 Holoprosencephaly 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) Hospitality Housing 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) ‘National Association of Hospital Hospitality Houses 4915 Auburn Ave., Ste. 303 Bethesda, MD 20814 (800) 543-9730 (301) 961-5264 (301)961-3094 Hydrocephalus Guardians of Hydrocephalus Research Foundation 2618 Ave. Z Brooklyn, NY 11235 (800) 458-8655 (718) 743-4473 (718) 743= 1171 (fax) National Hydrocephalus Foundation 12413 Centralia Rd. Lakewood, CA 90715-1623 (562) 402-3523 (562) 924-6666(fax) www.geocities.com/HotSprings/Villia/2300 Incontinence National Association for Continence PO Box 8310 Spartanburg, SC 29305 (800)252-3337 (864) 579-7900 (864) 579-7902 Simon Foundation for Continence PO Box 815 Wilmett, IL 60091 (800) 237-4666 (847) 864-4913 (847) 864-9758(fax) Kidney Disorders American Association of Kidney Patients 100 S. Ashley Dr., Ste. 280 Tampa, FL 33602 (800) 749-2257 (813)223-7099 (813)223-0001(fax) Canadian Pediatric Kidney Disease Research Center 401 Smith Rd. Ottowa, ON Can K1H 8L1 (613) 737-4098 (613) 738-4800(fax) Learning Disabilities Learning Disabilities Association of America 4156 Library Rd. Pittsburgh, PA 16234 (412) 341-1515 (412) 341-8077 (412) 344-0224(fax)
Learning Disabilities Association of Canada 323 Chapel St., Ste. 100 Ottawa, ON CAN L1N 7Z2 (613) 238-5721 (613) 235- 5391(fax) Leigh’s Disease 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) Leukemia 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) 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) Lissencephaly Lissencephaly Network 716 Autumn Ridge Ln. Fort Wayne, IN 46804 (219) 432-4310 (voice/fax) The Lissencephaly Network, Inc.- Canada Division 1549 Regent St. Regina, SK CAN S4N 1S1 (306) 569-0146 Liver Disorders 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) 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) Lung Diseases American Lung Association 1740 Broadway, 14th Fl. New York, NY 10019 (800) LUNG-USA (586-4872) Canadian Lung Association Attn: Alana Fox 1900 City Park Dr., Ste. 508 Gloucester, ON CAN K1J 1A3 (613) 747-6776 (613) 747- 7430 (fax) Microcephaly Microcephaly Network 362 Jean Talon St. Vanier, ON CAN K1L 6T9 (613) 742-5936 Multiple Sclerosis 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) National Multiple Sclerosis Society 733 3rd Ave., 6th FL. New York, NY 10017-3288 (800) 344-4867 (212) 986-3240 (212)986-7981(fax) Muscular Dystrophy Duchenne Parent Project 125 Marymount Ct. Middletown, OH 45042- 3755 (800) 714- KIDS (5437) (513) 424-7452 (513) 425-9907 Neurological Disorders Association for Comprehensive Neurotherapy 1128 Royal Palm Beach Blvd. #283 Royal Palm Beach, FL 33411 (561) 798-0472 (561) 798- 9820(fax) Making Headway Foundation, Inc. 115 King St. Chappaqua, NY 10514-3460 (914) 238-8384 (914) 238-1693(fax) Scoliosis National Scoliosis Foundation 5 Cabot Place Stoughton, MA 01071 (781) 341- 6333 (617) 341-8333 Seizure Disorders Threshold- Intractable Seizure Disorder Support Group & Newsletter 2150 Highway 35, Ste. 207C Sea Girt, NJ 08750 Stroke Heart and Stroke Foundation of Canada 222 Queens St., Ste. 1402 Ottawa, ON Can K1P 5V9 (613) 569- 4361 (613)241-3278 (fax) 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) Matching Resources 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) Canadian Organization for Rare Disorders (CORD) PO Box 814 Coaldale, AB CAN T1M 1M7 (403) 345-3948 (403) 345-4544 Easter Seal Society 250 Ferrand Dr., Ste 200 Don Millis, ON CAN M3C 3P2 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) www.waisman.wisc.edu/~rowley/mums/home.htmlx National Organization for Rare Disorders (NORD) 100 Rt. 37, PO Box 8923 New Fairfield, CT 06812-8923 (800) 999-6673 (203)746- 6487 (fax) |