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CANAVAN DISEASE |
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The Canavan Research Foundation Fairwood Professional Building New Fairfield, CT 06812 (203) 746-2436 (203) 746-3205 (fax) canavanresearch @aol.com |
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CANCER |
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American Cancer Society 1599 Clifton Rd. NE Atlanta, GA 30329-4251 (800) 227-2345 (404) 320-3333 (404) 982-3676 (fax) Canadian Cancer Society 10 Alcorn Ave., Ste. 200 CAN M4V 3B1 Toronto, ON (416) 961-7223 (416) 961-4189 (fax) ccs@cancer.ca http://www.cancer.caCandlelighters Childhood Cancer Foundation 3910 Warner St. Kensington, MD 20895 (800) 366-2223 (301) 962-3520 (phone/fax) info@candlelighters.org http://www.candlelighters.orgChildhood Cancer Foundation-Candlelighters Canada 55 Eglinton Ave E, Ste. 401 CAN M4P 1G8 Toronto, ON (800) 363-1062 (Canada only) (416) 489-6440 (416) 489-9812 (fax) staff@candlelighters.ca http://www.candlelighters.ca |
-Turcot Syndrome |
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CELIAC DISEASE |
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Canadian Celiac Association 5170 Dixie Rd, Ste 204 CAN L4W 1E3 Mississauga, ON (800) 363-7296 (Canada only) (905) 507-6208 (905) 507-4673 (fax) celiac@look.ca Celiac Disease Foundation 13251 Ventura Blvd. #1 Studio City Los Angeles, CA 91604-1838 (818) 990-2354 (818) 990-2379 (fax) cdf@celiac.org http://www.celiac.org |
-Dermatitis Herpetiformis -Digestive Disorders -Enteropathy, Gluten-Sensitive -Gluten-Sensitive Enteropathy |
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CELIAC SPRUE |
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American Celiac Society 59 Crystal Ave. West Orange, NJ 07052-3570 (973) 325-8837 (973) 669-8808 (fax) amerceliacsoc@netscape.net American Celiac Society Dietary Support Coalition 59 Crystal Ave. West Orange, NJ 07052-3570 (973) 325-8837 (973) 669-8808 (fax) bentleac@umdnj.edu |
-Dermatitis Herpetiformis -Digestive Disorders -Enteropathy, Gluten-Sensitive -Gluten-Sensitive Enteropathy |
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CENTRAL HYPOVENTILATION SYNDROME, CONGENITAL |
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Congenital Central Hypoventilation Syndrome Family Support Network 71 Maple St. Oneonta, NY 13820 Vanderlaanm@hartwick.edu |
-Haddad Syndrome |
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CEREBRAL PALSY |
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Ontario Federation for Cerebral Palsy 1630 Lawrence Ave. W., Ste. 104 CAN M6L 1C5 Toronto, ON (416) 244-9686 (877) 244-9686 (416)244-6553 (fax) ofcp@ofcp.on.ca National Brachial Plexus/Erb's Palsy Association, Inc. Brenda Copeland-Moore P.O. Box 23 Larsen, WI 54947 (920) 836-2151 (209) 644-5813 (fax) info@nbpepa.org United Cerebral Palsy Associations 1660 L St. NW, Ste. 700 Washington, DC 20036-5602 (800) 872-5827 (202) 776-0406 (202) 973-7197 (TDD) (202) 776-0414 (fax) national@ucp.org http://www.ucp.orgUnited Cerebral Palsy of NYC 80 Maiden Ln., 8th Fl. New York, NY 10038-4811 (212) 683-6700 infoucp@aol.com |
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CHARCOT-MARIE-TOOTH DISEASE |
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Charcot-Marie-Tooth Association 2700 Chestuct St. Chester, PA 19013 (800) 606-2682 (610) 499-9264 (610) 499-9267 (fax) cmtassoc@aol.com http://www.charcot-marie-tooth.org Muscular Dystrophy Association Bob Mackle, Director of Public Information 3300 E. Sunrise Dr. Tucson, AZ 85718-3208 (800) 572-1717 (520) 529-5300 (fax) mda@mdausa.org http://www.mdausa.org http://www.mdaenespanol.orgMuscular Dystrophy Family Foundation, Inc. 2330 N Meridian St. Indianapolis, IN 46208-5730 (800) 544-1213 (317) 923-MDFF (6333) mdff@mdff.org http://www.mdff.org |
-Sensory Motor Neuropathy, Hereditary |
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CHARGE ASSOCIATION |
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CHARGE Syndrome foundation 2004 Parkade Blvd. Columbia, MO 65202-3121 (800) 442-7604 (573) 499-4694 (voice/fax) marion@chargesyndrome.org |
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CHRIONIC VILLUS SAMPLING-RELATED DISABILITIES |
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CVS Parent Network Support Group 15706 Reynolds Ln. Oak Forest, IL 60452 (815) 462-0708 midsun@aol.com |
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CHROMOSOME 13 & 18 DISORDERS |
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Support Organization for Trisomy 18,13 and Related Disorders (SOFT) Barbara Van Herreweghe, President 2982 S Union St. Rochester, NY 14624 (800) 716-7638 (716) 594-1957 (fax) barbsoft@aol.com |
-Trisomy 18 -Trisomy 13 |
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CHROMOSOME 4P- |
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Chromosome 4P- Support Group Sharon York 2585 Taylor Longview, WA 98632 (360) 577-9033 syork@scattercreek.com Priority 4 Families Support Group (WHS & 4p-) c/o Brenda Grimmett 5536 Virginia Ct. Amherst, OH 44001 (440) 282-1460 (Phone) (440) 989-2005 (fax) bgrimmett@eriecoast.com http://priority4families.tripod.com
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-All 4P- P+ Syndrome -All 4Q- Q+ Ring 4 Chromosome |
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CHROMOSOME 8P DISORDERS |
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8p Duplication Support Group Genetics Ctr. Children's Medical Ctr. 1 Children's Plaza Dayton, OH 45404 (937) 641-5645 (937) 641-5325 (fax) genemail@aol.com |
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CHROMOSOME 9 DISORDERS |
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Chromosome 9p-Network 393 N Grass Valley Rd. Pine Valley, UT 84781 (435) 574-1121 beverly.udell@9pminus.org Trisomy 9 International Parent Support Children's Hospital of Michigan 3901 Beaubien Blvd. Detroit, MI 48201-2196 (313) 745-4513 (313) 745-4827 (fax) |
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CHROMOSOME 18 DISORDERS |
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Chromosome 18 Registry & Research Society 6302 fox Head San Antonio, TX 78247 (210) 657-4968 (voice/fax) office@chromosome18.org |
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CHROMOSOME 22 RING |
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Chromosome 22 Central 259 Kent Ave. CAN P4N 3C2 Timmins, ON (705) 268-3099 (voice/fax) 98152@c22c.org |
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CHROMOSOME DELETIONS |
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Chromosome Deletion Outreach, Inc. Box 724 Boca Raton, FL 33429-0724 (888) 236-6880 (561) 391-5098 (561) 395-4252 (fax) cdo@att.net |
-Chromosome 3, Monosomy 3P2 -Chromosome 4 Ring -Chromosome 9 Ring |
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CHROMOSOME INVERSIONS |
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National Center on Chromosome Inversions 1029 Johnson St. Des Moines, IA 50315 (515) 287-6798 (voice/fax) ncfci@msn.com |
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CHRONIC FATIGUE SYNDROME |
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CFIDS Association of America Youth Alliance PO Box 220398 Charlotte, NC 28222-0398 (800) 442-3437 (704) 365-9755 (fax) info@cfids.org |
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CLEFT PALATE |
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Cleft Palate Foundation 104 S Estes Dr., Ste. 204 Chapel Hill, NC 27514 (800) 242-5338 (919) 933-9044 (919) 933-9604 (fax) clefftline@aol.com |
-Ectrodactyly-Ectodermal Dysplasia-Cleft Lip/Palate (EEC) Syndrome -EEC Syndrome -Hay-Wells Syndrome -Kallman Syndrome -Spondyloepiphyseal Dysplasia Congenita |
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COBALAMIN (B12) DEFICIENCY |
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Cobalamin Network Susan Rump, Facilitator PO Box 174 Thetford Center, VT 05075 (802) 785-4029 suebee18@valley.net |
-Folate Metabolism; Inborn Error Of -Vitamin B12 Metabolism; Inborn Error Of |
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COCKAYNE SYNDROME |
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Share and Care Cockayne Syndrome Network c/o Shirley rodriguez PO Box 570618 Dallas, TX 75357 (972) 613-6273 (972) 613-4590 (fax) 93082@aol.com |
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COFFIN-LOWRY SYNDROME |
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Coffin-Lowry Syndrome foundation c/o Mary C. Hoffman 3045 255th Ave. SE Sammamish, WA 98075 (425) 427-0939 clsfoundation@yahoo.com |
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COLON CANCER, HEREDITARY |
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Hereditary colon Cancer Registry c/o Jill D. Brensinger Johns Hopkins Hospital 550 N. Broadway, Ste. 108 Baltimore, MD 21205 (410) 614-4038 (410) 614-9544 (fax) hccregistry@jhmi.edu http://www.hopkins-coloncancer.org Hereditary Colon Cancer Association (HCCA) 3601 N. 4th Ave Ste. 201 Sioux falls, SD 57104-0787 (800) 264-6783 (605) 373-2067 (605) 336-6699 (fax) info@hereditarycc.org http://www.hereditarycc.org |
-Familial Adenomatous Polyposis -Familial Juvenile Polyposis -Gardner Syndrome -Gastrointestinal Cancer -Hereditary Nonpolyposis Colorectal Cancer -Hutchinson-WeberPeutz Syndrome -Intestinal Polyposis -Intestinal Polyposiscutaneous Pigmentation Syndrome -Jeghers Syndrome -Turcot Syndrome |
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CONGENITAL ADRENAL HYPERPLASIA (CAH) |
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CARES Foundation Inc PO Box 264 Short Hills, NJ 07078-0264 (866) 227-3737 (973) 912-3895 (973) 912-3894 kelly@caresfoundation.org |
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CONNECTIVE TISSUE DISORDERS |
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Coalition for Heritable Disorders of Connective Tissue 382 Main St. Port Washington, NY 11050 (800) 862-7326 (516) 883-8712 (516) 883-8040 (fax) staff@marfan.org |
-Dermatolysis -Dermatochalasia -Dermatomegaly -Elastorrhexis |
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COOLEY ANEMIA/THALASSEMIA MAJOR |
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Cooley's Anemia Foundation 129-09 26th Ave., Ste. 203 flushing, NY 11354 (800) 522-7222 (718) 321-2873 (718) 321-3340 (fax) info@cooleysanemia.org Thalassemia Action Group 129-09 26th Ave., Ste. 203 Flushing, NY 11354 (800) 522-7222 (718) 321-2873 (718) 321-3340 (fax) ncaf@aol.com Thalassemia Foundation 32 Fern Ave. Weston, ON CAN M9N 1M2 (416) 242-8425 josie.sirna@utoronto.ca |
-Erythroblastotic Anemia of Childhood -Hemolytic Anemia -Herreditary Leptocytosis -Target Cell Anemia -Thalassemia Major |
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CORNELIA DE LANGE SYNDROME |
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Cornelia de Lange Syndrome Foundation 302 W. Main St.#100 Avon, CT 06001-3681 (800) 223-9355 (860) 676-8166 (860) 676-8337 (fax) info@cdlsusa.org |
-Amsterdam Dwarf Syndrome of De Lange |
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CRANIOFACIAL DISORDERS |
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AboutFace International 123 Edwards St. Toronto, ON CAN M5G1E2 (800) 665-3223 (416) 597-2229 (416) 597-8494 (fax) abtface@interlog.com http://www.interlog.com/abtface AboutFace USA PO Box 969 Batavia, IL 60510 (888) 486-1209 AboutFace2000@aol.com Tennessee Craniofacial Center c/o Terri Farmer 975 E. Third St. Chattanooga, TN 37403 (800) 418-3223 (423) 778-9192 (423) 778-8172 (fax) farmertm@erlanger.org http://www.erlanger.org/craniofacial/centerCraniosynostosis and Positional Plagioceohaly Support, Inc. (CAPPS) 2965-A Quarters Quantico, VA 22134 (877) 686-CAPS (2277) (866) 454-5902 (703) 445-1078 (fax) stpnjep@aol.com http://www.caps2000.comFACES-The National Craniofacial Association Lynne Mayfield President PO Box 11082 Chattanooga, TN 37401 (800) 332-2373 (423) 267-3124 (fax) faces@faces-cranio.org http://www.faces-cranio.orgForward Face: The Charity for Children with Craniofacial Conditions Inst. Of Reconstructive Plastic Surgery 317 E 34th St., Ste. 901 A New York, NY 10016 (800) 393-3223 (212) 684-5860 (212) 684-5864 (fax) Let's Face It PO Box 29972 Bellingham, WA 98228-1972 (360) 676-7325 letsfaceit@faceit.org National foundation for Facial Reconstruction 317 E. 34th St., Rm. 901 New York, NY 10016 (212) 263-6656 (212) 263-7534 (fax) info@nffr.org http://www.nffr.org
Children's Craniofacial Association 13140 Coit Rd. Ste. 307 Dallas, TX 75240 (800) 535-3643 (214) 570-9099 contactCCA@ccakids.com |
-Crouzon Disease -Ectrodactyly-ectodermal Dysplasia-Cleft Lip/Palate (EEC) Syndrome -EEC Syndrome -Facial Disfigurement -Focal Dermal Hypoplasia (FDH) Syndrome -Hallerman-Streiff Syndrome -Hay-Wells Syndrome -Hemangioma -Johanson-Blizzard Syndrome -Seckel Syndome -Amniotic Bands |
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CRI DU CHAT SYNDROME |
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5p-Society PO Box 268 Lakewood CA 90914-0268 (888) 970-0777 (714) 901-1544 (562) 920-5240 (fax) director@fivepminus.org |
-Le Jeune Syndrome |
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CROHN DISEASE & COLITIS |
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CCFA Crohn's & Colitis Foundation of America 386 Park Ave. S., 17th Fl. New York, NY 10016-8804 (800) 932-2423 (212) 685-3440 (212) 779-4098 (fax) info@ccfa.org Crohn's and colitis Foundation of Canada 60 St. Clair Ave. E., Ste. 600 Toronto, ON CAN M4T 1N5 (800) 387-1479 (Canada only) (416) 920-5035 (416) 929-0364 (fax) ccfc@ccfc.ca http://www.ccfc.caPediatric Crohn's & Colitis Association PO Box 188 Newton, Ma 02168 (617) 489-5854 (voice/fax) |
-Digestive Disorders -Ulcerative Colitis |
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CYCLIC VOMITING SYNDROME |
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Cyclic Vomiting Syndrome Association 3585 Cedar Hill Rd. NW Canal winchester, OH 43110 (614) 837-2586 (phone/fax) waitesd@cvsaonline.org |
-Abdominal Migraine |
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CYSTIC FIBROSIS |
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Canadian Cystic Fibrosis Foundation 2221 Yonge St., Ste. 601 Toronto, ON CAN M4S 2B4 (800) 378-2233 (Canada only) (416) 485-9149 (416) 485-0960 (fax) info@cysticfibrosis.ca Cystic Fibrosis Foundation 6931 Arlington Rd. Bethesda, MD 20814 (800) FIGHT CF (344-4823) (301) 951-6378 (fax) info@cff.org |
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CYSTINOSIS |
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Cystinosis Foundation 604 Vermont St Oakland, CA 94610 (800) 392-8458 (559) 222-7997 jd2jptz@qmis.net |
-Fanconi II |
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CYSTINURIA |
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Cystinuria support Network 21001 NE 36th St. Sammarnish, WA 98074 (425) 868-2996 (425) 897-0675 (fax) cystinuria@aol.com |
-Hypercystinuria -Kidney Stones |
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CYTOMEGALOVIRUS (CMV), CONGENITAL |
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National Congenital CMV Disease Registry Carol Griesser, Research Nurse 1102 Bates St MC 3-2371 Houston, TX 77030-2399 (832) 824-4387 (832) 825-4347 (fax) cmv@bcm.tmc.edu |
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DANDY-WALKER SYNDROME |
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Dandy-Walker Syndrome Network Desiree' Fleming, Parent/Founder 5030 142nd Path W. Apple Valley, MN 55124 (952) 423-4008 |
-Hydrocephalus, Obstructive |
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DEAF-BLIND |
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American Association of the Deaf-Blind 814 Thayer Ave., Ste. 302 silver spring, MD 20910 (800) 735-2258 (Voice) (301) 588-6545 (TDD) (301) 588-8705 (fax) National Family Association for Deaf-Blind 111 Middle Neck Rd. Sands Point, NY 11050 (800) 255-0411 (516) 944-7302 (fax) nfadb@aol.com The National Information Clearinghouse on children Who are Deaf-Blind (DB-LINK) DB-LINK 345 N. Monmouth Ave. Monmouth, OR 97361 (800) 438-9376 (800) 854-7013 blink@tr.wou.edu http://www.tr.wou.edu/dblinkThe Canadian Deafblind and Rubella Association Dr. Linda Marner President 350 Brant Ave. Brantford, ON CAN N3T 3J9 (519) 754-0729 (519) 754-5400 (fax) cdbra.nat@sympatico.ca http://www.cdbra.ca |
-Dual Sensory Impairments -Hay-Wells Syndrome -Visual Impairment/Hearing Impairment -Schinzel-Giedion Syndrome |
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DIABETES INSPIDUS |
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The Diabetes Insipidus foundation Inc. 4533 Ridge Dr Baltimorre, MD 21229 (410) 247-3953 (410) 247-5584 (fax) diabetesinsipidus@maxinter.net |
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DIABETES MELLITUS |
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American Diabetes Association Government Relations Dept 1701 N. Beauregard St. Alexandria, VA 22311 (703) 549-1500 (703) 549-8748 (fax) Canadian Diabetes Association 15 Toronto St., Ste, 800 Toronto, ON CAN M5C 2E3 (416) 363-3373 (416) 363-3393 (fax) info@diabetes.ca |
-Alstrom Syndrome |
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DOWN SYNDROME |
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Association for Children with Down Syndrome 4 Fern PL. Plainview, NY 11803 (516) 933-4700 (516) 933-7524 (fax) info@acds.org Canadian Down Syndrome Society 811 14th St. NW Calgary, AB CAN T2N 2A4 (800) 883-5608 (Canada only) (403) 270-8500 (403) 270-8291 (fax) dsinfo@cdss.ca Foundation for children with Down Syndrome 3920 Blaisdell Ave. S., Ste. 1 Minneapolis, MN. 55409 (918) 836-8698 (612) 822-1032 (fax) La Foundation John Langdon Down, A.C. Selva 4 Insurgentes Cuicuilco Delegacion coyocan, 04530 Mexico DF (52) 66-66-8580 (52) 56-06-3800 (fax) fjldown@mail.internet.com.mix International Foundation for Genetic Research/The Michael fund Randy Engel, Executive Director 500 A garden city Dr. Pittsburgh, PA 15146 (412) 823-6380 tengel@bellatlantic.net http://www.michaelfund.orgNational down Syndrome Congress 1370Center Dr., Ste. 102 Atlanta, GA 30338 (800) 232-6372 (770) 604-9898 (fax) ndsccenter@aol.com http://www.Ndsccenter.orgNational Down Syndrome Society 666 Broadway, 8th Fl. New York, NY 10012-2317 (800) 221-4602 (212) 460-9330 (212) 979-2873 (fax) info@ndss.org http://www.ndss.orgTrisomy 21 Research Foundation 933 First Colonial Rd., Ste. 109 Virginia Beach, VA 23454 (757) 425-1969 (757) 425-1822 (fax) lleichtman@macs.net http://www.tri21.org |
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DUBOWITZ SYNDROME |
||
|
Dubowitz Syndrome Parent Support Network PO Box 2441 Vincennes, IN 47591 (812) 886-0575 (812) 886-1128 (fax) bobbie@dubowitz.org |
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DWARFISM |
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|
Billy Barty foundation 929 W. Olive Ave., Ste. C Burbank, CA 91506 (818) 953-5410 Metatropic Dwarf Registry 3393 Geneva Dr. Santa Clara, CA 95051 (408) 244-6354 (408) 296-6317 (fax) figone@netgate.net |
-Skeletal Dysplasia |
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DYSAUTONOMIA |
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|
National Dysautonomia Research Foundation (NDRF) 421 W. Fourth St., Ste. 9 Red Wing, MN 55066 (651) 267-0525 (651) 267-0524 (fax) ndrf@ndrf.org |
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DYSLEXIA |
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|
Dyslexia Research Institute Dr. Patricia K. Hardman Director 5746 Centerville Rd. Tallahassee, Fl 32309 (850) 893-2216 (850) 893-2440 (fax) dri@talstar.com The International Dyslexia Association 8600 La Salle Rd. Chester Bldg., Ste. 382, Baltimore, MD 21286-2044 (800) 222-3123 (410) 296-0232 (410) 321-5069 (fax) info@interdys.org http://www.interdys.orgRecording for the Blind & Dyslexic 20 Roszel Rd. Princeton, NJ 08540 (609) 452-0606 (609) 520-7990 (fax) |
-SLD |
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DYSTONIA |
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Dystonia Medical Research Foundation Robert McAlister, Ph.D. Executive Director One E. Wacker Dr., Ste. 2430 Chicago, IL 60601-1905 (312) 755-0198 (312) 803-0138 (fax) jdystonia@dystoniafoundation.org http://www.dystoniafoundation.org Dystonia Medical Research Foundation-Canada 116-230 Heath St. W. Toronto, ON CAN M5P 1N8 (800) 361-8061 (Canada only) (416) 488-6974 (416) 488-8323 Dystonia@dystoniafoundation.org |
-Ziehen-Oppenheim Disease -Torsian Dystonia, Idiopathic -Spasmodic Wryneck -Spasmodic Torticollis -Spasmodic Dysphonia |
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