Specific Resources about Types of Disabilities
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Acid Maltase Deficiency |
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(AMDA)Acid Maltase Deficiency Assoc. PO Box 700248 San Antonio, TX 78270-0248 (210) 494-6144 (210) 490-7161 (fax) tianrama@aol.com |
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Acidemia, Organic |
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Organic Acidemia Association 13210 35th Ave. N. Plymouth, MN 55441 (763) 599-1979 (763) 694-0017 (fax) oaanews@aol.com |
Includes: Isovaleric Acidemia Methylmalonic Acidemia Propionic Acidemia Alaninuria |
Acoustic Neuroma |
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Acoustic Neuroma Association 600 Peachtree Pkwy., Ste. 108 Cumming, GA 30041 (770) 205-8211 (770) 205-0239 (fax) anausa@aol.com |
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Adrenal Disorders |
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National Adrenal Disease Foundation 505 Northern Blvd. Great Neck, NY 11021 (516) 487-4992 NADFMAIL@aol.com |
Includes: 1-ß-Hydroxylase Deficiency 17-20-Desmolase Deficiency 17-Alpha-Hydroxylase Deficiency 17-Hydroxylase Deficiency 3-ß-Hydroxysteroid Dehydrogenase Deficiency Acth Deficiency Addison Disease Adrenal Cortex Male Pseudohermaphroditism Adrenocorticotropic Hormone Deficiency Adrenogenital Syndrome Star Protein Deficiency |
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Agenesis of the Corpus Callosum |
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ACC Network 5749 Merill Hall, Rm. 118 University of Maine Orono, ME 04469-5749 (207) 581-3119 (207) 581-3120 (fax) |
Includes: Agenesis of Commissura Magna Cerebri |
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Aicardi Syndrome |
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Aicardi Syndrome Awareness and Support Group/network 29 Delavan Ave. Toronto, ON CAN M5P 1T2 (416) 481-4095 asasn@sympatico.cca Aicardi Syndrome Newsletter, Inc. Denise Park Parsons Editor, Trustee 1510 Polo Fields Ct. Louisville, KY 40245 (502) 244-9152 AICNews@aol.com |
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AIDS |
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CDC National STD and AIDS Hotlines Tanya Montoya, Information Coordinator PO Box 13827 Research Triangle Park, NC 27709 (800) 334-7432 (English/Spanish) (800) 227-8922 (800) 342-2437 (800) 243-7889 (TDD) (919) 361-4855 (fax) hivnet@ashastd.org National Pediatric & Family HIV Resource Center Estella Ortega, PC Applications Specialist PO Box 1709 Newark, NJ 07101-1709 (973) 972-0410 (973) 972-0399 (fax) ortegaes@umdnj.edu |
Acquired Immune Deficiency Syndrome |
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Alagille Syndrome |
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Alagille Syndrome Alliance 10630 SW Garden Park Pl. Tigard, OR 97223 (503) 639-6217 alagille@teleport.com |
Includes: Arteriohepatic Dysplasia |
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Albinism & Hypopigmentation |
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NOAH (National Organization for Albinism and Hypopigmentation) Micheal McGowan President Po Box 969 E. Hampstead, NH 03826-0959 (800) 473-2310 (603) 877-6049 (phone/fax) info@albinism.org |
Includes: Albinism Albinism Ocular Albinism Oculoccutaneous X Syndrome |
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Alopecia Areata National |
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National Alopecia Areata Foundation PO Box 150760 San Rafeal, CA 94915-0760 (415) 472-3780 info@naaf.org |
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Alpha-1-Antitrypsin (AAT) Deficiency |
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Alpha-1-Antitrypsin (AAT) Deficiency National Association 8120 Penn Ave. S Ste. 549 Minneapolis, MN 55431 (800) 521-3125 (952) 703-9975 (952) 703-9977 (fax) info@alpha1.org |
Serum Protease Inhibitor Deficiency |
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Alpha Thalassemia Mental Retardation Syndrome, X-linked |
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Alpha Thalassemia Mental Retardation Syndrome (ATR-X) Support Group http://www.groups.yahoo.com/group/atr-x c/o International Rare Disease Support Network (IRDSN) David Hughes President/Founder 3604 Hendvick Dr Plano, TX 75074 (972) 423-6117 Hughes.family@attbi.com |
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Amputation |
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American Amputee Foundation PO Box 250218 Little Rock, AR 72225 (501) 666-2523 (501) 666-8367 (fax) Amputee Coalition of America 900 E. Hill Ave., Ate.285 Knoxville, TN 27915-2568 (888) AMP-KNOW (267-5669) (865) 524-9883 (865) 525-7917 (fax) acainfo@amputee-coalition.org http://www.amputee-coalition.org National Amputation Foundation 38-40 Church St. Malvern, NY 11565 (516) 887-3600 (516) 887-3667 (fax) amps76@aol.com |
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Anemia, Aplastic |
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Aplastic Anemia and Myelodysplasia Association of Canada 22 Aikenhead Rd. Etobicoke, ON CAN M9R 2Z3 (416) 235-0468 (519) 235-1756 (fax) http://www.aplastic.ualberta.ca Aplastic Anemia MDS International Foundation, Inc. PO Box 613 Annapolis, MD 21404-0613 (800) 747-2820 (410) 867-0240 (fax) aamdsoffice@aol.com |
Include: Anemia, Aregenerative Anemia, Hypoplastic Anemia, Refractory Anemia, Toxic Paralytic Toxic Paralytic Anemia |
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Anemia, Diamond Blackfan |
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Diamond Blackfan Anemia Registry 1 Gustave Levy Pl. Box 1208 New York, NY 10029 (212) 241-6031 (212) 360-6921 (fax) |
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Anemia, Fanconi |
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Fanconi Anemia Research Fund/Support Group 1801 willamette St, Ste 200 Eugene, OR 97401 (800) 82804891 (family support only) (541) 687-4658 (541)687-0548 (fax) info@fanconi.org |
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Angelman Syndrome |
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Angelman Syndrome Foundation 414 Plaza Dr., Ste. 209 Westmont, IL 60559-5507 (800) 432-6435 (630) 734-9267 (630) 655-0391 (fax) info@angelman.org Canadian Angelman Syndrome Society PO Box 37 Priddis, AB CAN, TOL 1WO (403) 931-2415 (403) 931-4237 (fax) cass@cadvision.com |
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Aniridia |
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Anradia Network PO Box 6444 Colchester CO4 3XU UK (+44) 0777989624 hannah@aniridia.org |
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Anophthalmia |
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International Children's Anophthalmia Network 5501 Old York Rd. Philadelphia, PA 19141 (800) 580-4226 (215) 456-2356 (fax) |
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Anorectal Malformations |
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Pull-Thru Network 2312 Savoy St. Hoover, Al 35226 (205) 978-2930 (203) 221-9212 info@pullthru/.org |
Anal Atresia Anal Stenosis |
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Anorexia Nervosa |
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American Anorexia Bulimia Association, Inc. 165 W 46th St Ste 1108 new York, NY 10036 (212) 575-6200 National Association of Anorexia Nervosa and Related Disorders PO Box 7 Highland Park, IL 60035 (847) 831-3438 (847) 433-4632 (fax) anad20@aol.com AnadAdvocacy@aol.com |
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Apert Syndrome |
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Apert Syndrome Pen Pal Network PO Box 115 Providence, RI 02901 (401) 454-4849 |
Syndactylic Oxycephaly Acrocephalosyndactyly, Type I |
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Aphasia, Acquired |
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National Aphasia Association Penny Montgomery-West, Response Center Directorr 29 John St.,#1103 New York, NY 10038 (800) 922-4622 (212) 267-2812 (fax) naa@aphasia.org |
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Apnea, Sleep |
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American Sleep Apnea Association 1424 K St. NW Ste. 302 Washington, DC 20005 (202) 293-3150 (202) 293-3656 (fax) asaa@sleepapnea.org |
Sleep Apnea Schinzel-Giedion Syndrome |
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Apraxia |
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C.H.E.R.A.B. Foundation, Inc. (Communication, Help, Education, Reseach, Apraxia Base Foundation) Lisa Geng, President PO Box 8524 PSL, Florida 34952-8524 (772) 335-5135 help@cherab.org The Childhood Apraxia of Speech Association 123 Eisle Rd. Cheswick, PA 15024 (412) 767-6589 (412) 767-0534 (fax) helpdesk@apraxia.org |
Speech Disorders |
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Arnold Chiari Malformation |
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National Institute of Neurological Disorders (NIH) 31 Center Dr., MSC 2540 Bldg. 31, Rm. 8A16 (800) 352-9424 (301) 496-5751 (301) 402-2186 (fax) |
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Arthritis |
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American Juvenile Arthritis Organization PO Box 7669 Atlanta, GA 30357 (800) 283-7800 (404) 872-7100 (404) 872-9559 (fax) Arthritis Society 393 University Ave., Ste. 1700 Toronto, ON CAN M5G 1E6 (800) 321-1433 (Canada only) (416) 979-8339 (416) 979-8366 (fax) nkent@arthritis.ca National Institute of Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse (NIAMS) 1 AMS Circle Bethesda, MD 20892-3675 (301) 495-4484 (877) 22-NIAMS (226-4267) (toll free) (301) 565-2966 (TDD) (301) 718-6366 (fax) |
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Arthrogryposis Multiplex Congenita |
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AVENUES: A National Support Group for Arthrogryposis Multiplex Congenita PO Box 5192 Sonora, CA 95370 (209) 928-3688 info@avenuesforamc.com |
Amyoplasia, Congenita |
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Asthma & Allergy |
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Allergy and Asthma Network Mothers of Asthmatics 2751 Prosperity Ave., Ste. 150 Fairfax, VA 22031-4397 (800) 878-4403 (703) 641-9595 (703) 573-7794 (fax) info@aanma.org Asthma and Allergy Foundation of America 1233 20th St. NW, Ste. 402 Washington, DC 20036 (800) 727-8462 (202) 466-7643 (202) 466-8940 (fax) info@aafa.org Asthma Society of Canada 130 Bridgeland Ave., Ste. 425 Toronto, ON CAN M6A 1Z4 (800) 787-3880 (416) 787-4050 (416) 787-5807 (fax) info@asthma.ca |
Allergy
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Ataxia |
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National Ataxia Foundation 2600 Fernbook Ln., Ste. 119 Minneapolis, MN 5547-4752 (763) 553-0020 (763) 553-0167 (fax) naf@mr.net |
Includes: Ataxia, Familial Ataxia, Friedreich Ataxia, Spinocerebellar Ataxia, Telangiectasia Ataxia with Lactic Acidosis II Spinocerebellar Ataxia Spastic Paraplegia, Familiar |
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Attention Deficit Disorder |
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The ADHD Challenge PO Box 488 West Peabody, MA 01985-7277 (800) 233-2322 Learning Disabilities AD-IN: Attention Deficit Information Network 58 Prince St. Needham, MA 02492 (781) 455-9895 (781) 444-5466 (fax) adin@gis.net CHADD- Canada, Inc. -- Children and Adults with Attention Deficit Disorder 1376 Bank St. Ottawa, ON CAN K1H 1B3 (613) 731-1209 (613) 257-1563 (fax) chaddcanad@hotmail.com http://www.members.tripod.com/~chaddcanada/index.html CHADD: Children and Adults with Attention Deficit Hyperactivity Disorders 8181 Professional Pl., Ste. 201 Landover, MD 20785 (800) 233-4050 (301) 306-7070 (301) 306-7090 (fax) national@chadd.org National ADD Association 1788 2nd St., Ste. 200 Highland Pk, IL 60035 (847) 432-ADDA (2332) mail@add.org
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Tourette Syndrome |
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Autism |
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Asperger Syndrome Coalition of the United States PO Box 351268 Jacksonville, FL 32235-1268 (904) 745-6741 (866) 4-ASPRGR (427-7747) info@asc-us.org Autism Independent UK 199/201 Blanford Ave. Kettering, Northants NN16 9AT United Kingdom 01534 523274 (phone/fax) autism@rmplc.co.uk Autism National Committee PO Box 6175 N. Plymouth, MA 02362-6175 (781) 648-1813 (phone/fax) Autism Research Insitute Mallie Odle, Assistant to Director 4182 Adams Ave. San Diego, CA 92116 (619) 281-7165 (619) 563-6840 (fax) Autism Resources Chapel Hill TEACH Center 100 Renee Lynn Ct. Carrboro, NC 27510 (919) 966-5156 http://www.unc.edu/~cory/autism-info Autism Society of America 7910 Woodmongt Ave., Ste. 300 Bethesda, MD 20814-3067 (800) 3AUTISM (3288476) (301) 657-0869 (fax) http://www.autism-society.org/ Autism Society of Canada 129 Yorkville Ave., #202 Toronto, ON CAN M5R 1C4 (416) 922-0302 (416) 922-1032 (fax) Center for Study of Autism PO Box 4538 Salem, OR 97302 (503) 363-9110 (voice/fax) sait@teleport.com |
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Autism and Sensory Impairments |
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Autism Network for Hearing and Visually Impaired Persons c/o Dolores and Alan Bartel 7510 Oceanfront Ave. Virginia Beach, VA 23451 (757) 428-9036 (757) 428-0019 (fax) CAN (Cure Autism Now) 5455 Wilshire Blvd., Ste. 715 Los Angeles, CA 90036 (888) 8-AUTISM (288476) (323) 549-0500 (323) 549-0547 (fax) info@cureautismnow.org Indiana Resource Center for Autism (IRCA) Indiana Institute on Disability and Community at Indiana University-Bloomington 2853 E. Tenth St. Bloomington, IN 47408-2696 (812) 855-6508 (812) 855-9396 (TDD) (812) 855-9630 (fax) prattc@indiana.edu http://www.isdd.indiana.edu/~irca The National Alliance for Autism Research 99 Wall St., Reseach Park Princeton, NJ 08540 (888) 777-NAAR (5227) (609) 430-9160 (609) 430-9163 (fax) naar@naar.org On-line Asperger's Syndrome Information and Support (OASIS) Bkirby@udel.edu http://www.udel.edu/bkirby/asperger TEACCH 310 Medical School Wing E University of North Carolina /CB #7180 Chapel Hill, NC27599-7180 (919) 966-2174 (919) 966-4127 (fax) teacch@unc.edu Yale Program for Autism, Praderwilli Syndrome, and Williams Syndrome Yale Child Study Center 230 S. Frontage Rd. PO Box 207900 New Haven, CT 06520*7900 (203) 785-7923 (203) 785-7611 (fax) devdis@yale.edu |
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Autoimmune Disorders |
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American Autoimmune Related Diseases Association 22100 Gratiot Ave. East Detroit, MI 48021 (800) 598-4668 (586) 776-3900 (586) 766-3903 (fax) aarda@aol.com |
Includes: Autoimmune Myocarditis |
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Balance Disorders & Dizziness |
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Ear Foundation 1817 Patterson St. Nashville, TN 37203-2110 (800) 545-4327 (voice/TDD) (615) 329-7809 (615) 329-7935 (fax) ear@earfoundation.org |
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Barth Syndrome |
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The Barth Syndrome Foundation, Inc. PO Box 974 Perry, FL 32348 (850) 223-1128 (402) 421- 1926 postmaster@barthsyndrome.org |
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Batten Disease |
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Batten disease Support and Research Association 120 Humphries Dr., Ste 2 Reynoldsburg, OH 43068 (800) 448-4570 (740) 927-4298 bdsra1@bdsra.com Batten Disease Support and Research Association, Canadian Chapter c/o Bev Maxim 17 Bell St. Regina, SK CAN S4S 4B7 (306) 789-9047 (800) 400-8969 bdsra1@bdsra.org National Batten Disease Registry 1050 Forest Hill Rd. Staten Island, NY 10314-6399 (800) 952 |
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Beckwith-wiedemann Syndrome |
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Beckwith-Wiedemann Support Network 2711 Colony Rd. Ann Arbor, MI 48104 (800) 837-2976 (parents only) (734) 973-0263 (734) 973-9721 (fax) A800BWSN@aol.com |
-Simpson-Golabi-Behmel Syndrome |
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Bell's Palsy |
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Bell's Palsy Research Foundation 9121 E. Tanque Verde Ste. 105-286 Tuscon, AZ 85749 (520) 749-4614 (520) 749-0489 (fax) BellsPalsy@aol.co |
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Blepharophimosis, Ptosis, Epicanthus Inversus Syndrome (BPES) |
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Blepharophimosis, Ptosis, Epicanthus Inversus Family Network c/o Lynne Schauble SE 820 Meadow Vale Dr. Pullman, WA 99163 (509) 332-6628 lschauble@gocougs.wsu.edu |
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Bone Marrow Transplant |
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Blood & Marrow Transplant Information Network 2900 Skokie Valley Rd., Ste B Highland Park, IL 60035 (888) 597-7674 (847) 433-3313 (847) 433-4599 (fax) help@bmtinfonet.org |
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BOWEL DYSFUNCTION/IRRITABLE BOWEL SYNDROME |
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International Foundation for Functional Gastrointestinal Disorders (IFFGD) PO Box 170864 Milwaukee, WI 53217 (888) 964-2001 (414) 964-1799 (414) 964-7176 (fax) IFFGD@iffgd.org |
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BRAIN INJURY |
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Brain Injury Association of America Chris Fuller, Public Relations Specialist 105 N. Alfred St. Alexandria, VA 22314 (703) 236-6000 (703) 236-6001 (fax) publicrelations@biausa.org Coma Recovery Association, Inc. Paulette Dernato, Program Coordinator 807 Carman Ave. Westbury, NY 11590 (516) 997-1826 (516) 997-1613 (fax) crainfo@cornarecovery.org |
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BRAIN TUMORS |
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American Brain Tumor Association 2720 River Rd., Ste. 146 Des Plaines, IL 60018 (800) 886-2282 (847) 827-9910 (847) 827-9918 (fax) info@abta.org Brain Tumor Foundation for Children, Inc. 1835 Savoy Dr., Ste. 316 Atlanta, GA 30341 (770) 458-5554 (770) 448-5467 (fax) btfc@btfc.org Brain Tumor Foundation of Canada 650 Waterloo St., Ste. 100 CAN N6B 2R4 London, ON (800) 265-5106 (519) 642-7755 (519) 642-7192 (fax) info@btfc.org Brain Tumor Society 124 Watertown St., Ste 3-H Watertown, MA 02472 (800) 770-8287 (617) 924-9997 (617) 924-9998 (fax) info@tbts.org Children's Brain Tumor Foundation 274 Madison Ave., Ste. 1301 New York, NY 10016 (212) 448-9494 (866) CBT-HOPE (228-4673) (212) 448-1022 (fax) cbtfny@aol.com
Making Headway Foundation, Inc. 115 King St. Chappaqua, NY 10514-3460 (914) 238-8384 (914) 238-1693 (fax) mhf@makingheadway.org National Brain Tumor Foundation Cathy Clarence 414 Thirteenth St., Ste. 700 Oakland, CA 94612-2603 (800) 934-2873 (info line) (510) 839-9777 (510) 839-9779 (fax) nbtf@braintumor.org |
-Turcot Syndrome |
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BURNS |
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Phoenix Society for Burn Survivors 1840 Wealthy SE Ste. 215 East Grand Rapids, MI 49506 (800) 888-2876 (616) 458-2773 (616) 458-2831 info@phoenix-society.org |
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