Resources
Resources
For more information on folic acid, folate, neural tube defects, spina bifida, etc., visit the sites below. There are numerous organizations that serve families affected by NTDs, as well as many others that offer information on NTDs. Genetic counseling agencies talk with people concerned about their risk of having children with birth defects.
Consumer Resources
Organizations
Professional Resources
Genetic Counseling Agencies
Books with Information on Folic Acid Folic Acid: The Vital Nutrient that Fights Birth Defects, Cancer, and Heart Disease Sidney M. Baker Keats Publishing Company, Inc. March 1995 ISBN: 0879836628 Price: $3.50 Folic Acid Hasnain Walji Thorsons, publisher November 1997 ISBN: 0722533209 Price: $6.00 Books with Information on Neural Tube Defects/Spina Bifida Children with Spina Bifida: A Parent's Guide Marlene Lutkenhof, Ed. Woodbine House January 1999 ISBN: 0933149603 Price: $16.95 Living with Spina Bifida: A Guide for Families and Professionals Adrian Sandler University of North Carolina Press September 1997 ISBN: 0807846570 Price $19.95 Parent's Guide to Spina Bifida Beth Ann Bloom,Edward L. Seljeskog University of Minnesota Press November 1990 ISBN: 0816614865 Price: $14.95 Caring for Your Child with Spina Bifida Nancy Clopton Eterna Press May 1981 ISBN: 0934670048 Price $5.95 Back to top
Books with Information on Folic Acid
Folic Acid: The Vital Nutrient that Fights Birth Defects, Cancer, and Heart Disease Sidney M. Baker Keats Publishing Compnay, Inc. March 1995 ISBN: 0879836628 Price: $3.50 Folic Acid Hasnain Walji Thorsons, publisher November 1997 ISBN: 0722533209 Price: $6.00
Books with Information on Neural Tube Defects/Spina Bifida
Prenatal Screening, Policies, and Values: The Example of Neural Tube Defects Elena O. Nightingale Susan N.B Meister, Ed. Harvard Univ. Press March 1987 ISBN: 0674700759 Price: $10.95 Spina Bifida- Neural Tube Defects: Basic Research, Interdisciplinary Diagnostics and Treatment, Results and Prognosis Paul Gless, Ed.; J. Lorder, Ed.; Dieter Voth, Ed. Walter de Gruyter, Inc. July 1986 ISBN: 3110107686 Price: $119.25 Children with Spina Bifida: A Parent's Guide Marlene Lutkenhof, Ed. Woodbine House January 1999 ISBN: 0933149603 Price: $16.95 Living with Spina Bifida: A Guide for Families and Professionals Adrian Sandler University of North Carolina Press September 1997 ISBN: 0807846570 Price $19.95 Parent's Guide to Spina Bifida Beth Ann Bloom,Edward L. Seljeskog University of Minnesota Press November 1990 ISBN: 0816614865 Price: $14.95 Caring for Your Child with Spina Bifida Nancy Clopton Eterna Press May 1981 ISBN: 0934670048 Price $5.95
Books on Educating
Teaching Patients with Low Literacy Skills Cecilia Conrath Doak, Jane H. Root, Leonard G. Doak Lippincott Raven Publisher June 1995 ISBN: 0397551614 $27.95 Information Power: Building Partnerships for Learning Association for Education Communication American Library, publisher June 1998 ISBN: 0838934706 Price: $35.00
Strategies for Teaching Anthony S. Jones, Lawrence W. Bagford, Edward A Wallen Sarecrow Pr, Inc. June 1979 ISBN: 0810812576 Price: $27.50
Alliance for Hispanic Health [formerly National Coalition of Hispanic Health and Human Services (COSSMHO)] 1501 16th Street, NW Washington, DC 20036-1401 (202) 797-4353 American Academy of Pediatrics 141 Northwest Point Boulevard P.O. Box 927 Elk Grove Village, IL 60007-1098 (847) 228-5005 http://www.aap.org American Academy of Family Physicians 11400 Tomahawk Creek Parkway Leawood, KS 66211-2672 P.O. Box 11210 Shawnee Mission, KS 66207-1210 1-800-274-2237 http://www.aafp.org American College of Obstetricians and Gynecologists 409 12th Street SW Washington, DC 20090-6920 (202) 484-5107 http://www.acog.org American College of Physicians 190 N. Independence Mall West Philadelphia, PA 19106-1572 1-800-523-1546 http://www.acponline.org American Dietetic Association 216 West Jackson Boulevard Chicago, IL 60606-6995 1-800-366-1655 (312) 899-0400 http://www.eatright.org American Nurses Association 600 Maryland Avenue, SW Suite 100 West Washington, DC 20024-2571 (202) 651-700/1-800-274-4ANA Fax: (202) 651-7001 http://www.nursingworld.org American Pharmaceutical Association 2215 Constitution Avenue, NW Washington, DC 20037 (202) 628-4410 http://www.aphanet.org American Society for Nutritional Sciences 9650 Rockville Pike Bethsada, Maryland 20814-3998 (301) 530-7050 Fax (301) 571-1892 http://www.faseb.org\asns Association of State and Territorial Public Health Nutrition Disorders 1015 15th Street NW Suite 403 Washington, DC 20005 (202) 408-1257 Fax: (202) 408-1259 Association of Women's Health, Obstetric, and Neonatal Nurses 2000 L Street NW Suite 749 Washington, DC 20036 1-800-673-8499 Fax: (202) 728-0575 http://www.babycenter.com/refcap/3822.html Centers for Disease Control and Prevention National Center for Environmental Health Birth Defects and Developmental Disabilities 4770 Buford Highway NE Mailstop F-45 Atlanta, GA 30341-3724 (404) 488-7160 Web site: http://www.cdc.gov March of Dimes Birth Defects Foundation 1275 Mamaroneck Ave. White Plains, NY 10605 (914) 428-7100 Voice mail only: (914) 997-4750 Web site: http://www.modimes.org/ To receive Public Health Education Materials, call the March of Dimes Resource Center at 1-888-MODIMES Maternal and Child Health Clearinghouse 5600 Fishers Lane, Room 18A-55 Rockville, MD 20857 (703) 821-8955 National Birth Defects Network NTD Surveillance/Folic Acid Education: Lisa Miller (303) 692-2663 Lowell Sever (713) 500-9344 Newsletter and Communications: Bob Meyer (919) 715-4476 http://www.nbdpn.org National Healthy Mothers, Healthy Babies Coalition 121 North Washington St. Alexandria, VA 22314 (703) 836-6110 Fax: (703) 836-3470 http://www.hmhb.org National Rehabilitation Information Center (NARIC) 1010 Wayne Avenue, Suite 800 Silver Spring, MD 20910 (301) 562-2400 1-800-346-2742 http://www.naric.com/naric National Organization for Rare Disorders, Inc., (NORD) P.O. Box 8923 New Fairfiled, CT 06812-8923 1-800-999-6673 (203) 746-6518 http://www.rarediseases.org/ Spina Bifida Association of America 4590 MacArthur Boulevard, NW Suite 250 Washington, DC 20007-4226 (202) 944-3285 1-800 621-3141 Fax (202) 944-3295 http://www.sbaa.org/ Latex Information Page: http://www.sbaa.org/html/sbaa_latex.html Teratology Society Business Center Drive, Suite 302 Reston, VA 20190-5332 (703) 438-3104 http://www.teratology.org/ Other Online Resources: International Clearinghouse for Birth Defects Monitoring Systems http://www.icbd.org Organization for Teratology Information Services (OTIS) Web site: http://orpheus-1.ucsd.edu/otis/index.htmlState of Florida
Florida Agency for Health Care Administration Information Center: (850) 414-7300 or 1-888-419-3456 http://www.fdhc.state.fl.us For information on health conditions refer to http://www.floridahealthstat.com Florida Birth Defects Registry Bureau of Environmental Epidemiology 4052 Bald Cypress Way, Bin A-08 Tallahassee, FL 32399-1712 (850) 488-3370 Access through http://www.doh.state.fl.us Florida Department of Agriculture and Consumer Services The Capitol Tallahassee, FL 32399-0800 (850) 488-3022 http://doacs.state.fl.us/ Florida Folic Acid Council Lori Reeves, MPH East Central Florida Chapter, March of Dimes 341 N. Maitland Ave., Suite 115 Maitland, FL 32751 (407) 599-5077 Fax: (407) 599-5870 Florida Healthy Baby Hotline 1-800-451-BABY (2229) Florida's Healthy Start Healthy Start Coalition Contacts: http://www.sanctum.com/healthy/xref.html University of South Florida Department of Pediatrics Birth Defects Center 17 Davis Blvd., Suite 401 Tampa, FL 33606 (813) 259-8848 http://bdc.med.usf.eduHospitals and Clinics
All Children's Hospital Spina Bifida Team 801 6th Street South St. Petersburg, FL 33701 (727) 898-7451 http://www.allkids.org Arnold Palmer Hospital for Women and Children 92 West Miller Orlando,FL 32806 (407) 649-9111 http://www.orhs.org/med_facilities/aph_main.html Medical College of Georgia Children's Medical Center Clinic for Children with Spina Bifida 1446 Harper Street Augusta, GA 30912 (706) 721-4262 http://www.mcg.edu Miami Children's Hospital 3100 SW 62nd Avenue Miami, FL 33155 1-800-432-6837 http://www.mch.com Nemours Children's Clinic Two locations for children with spina bifida: 807 Nira Street Jacksonville, FL 32207 (904) 390-3562 http://www.kidshealth.org/ncc Orlando, FL 32806 83 W. Columbia Street (407) 649-9111, ext. 5609 Shands Children's Hospital at the University of Florida 1600 SW Archer Road Gainesville, FL 32612 (352) 395-0111 Spina Bifida Clinic (352) 395-0552 http://www.shands.org/children/ Shriners Hospitals for Children 2900 Rocky Point Dr. Tampa, FL 33607-1460 (813) 281-0300 1-800-237-5055 Web site: http://www.shrinershq.org/Governmental Health Agencies
National Institute of Child Health and Human Development Bldg 31, Room 2A32, MSC 2425 31 Center Drive Bethesda, MD 20892-2425 http://www.nichd.nih.gov/ National Institutes of Health (NIH) Bethesda, MD 20892 http://www.nih.gov/ U.S. Department of Agriculture (USDA) U.S. Department of Agriculture, 14th & Independence Ave. SW, Washington, D.C. 20250 (202) 720-2791 http://www.usda.gov Food Composition Database: www.nal.usda.goc/fnic/foodcomp/ USDA Center for Nutrition Policy and Promotion 1120 20th Street, N.W. Suite 200, North Lobby Washington, DC 20036 Telephone (202) 418-2312, Fax (202) 208-2321 http://www.usda.gov/cnpp/ USDA Food and Nutrition Service http://www.fns.usda.gov/fns/ Email: webmaster@fns.usda.gov U.S. Department of Health and Human Services Region IV Contact Information (includes Florida) Atlanta Federal Center 61 Forsyth Street, Room 5B95 Atlanta, GA 30303-8909 (404) 562-7888 Fax: (404) 562-7899 Areas: AL, FL, GA, KY, MS, NC, SC, TN http://www.hhs.gov/ U. S. Food and Drug Administration 1-888-INFO-FDA (463-6332) http://www.fda.gov Back to top
