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Specialneedsnurse.org, Forums:"The information place for special needs. I hope to provide a place for nurses, teachers and parents to find links, articles, continuing education on various developmental disabilities such as mental retardation, autism spectrum disorder, pdd, Rett's syndrome, Asperger's syndrome and so many more. I hope to also provide a place to chat and exchange information regarding nursing, parenting, and teaching problems/issues of children and adults with special needs on the (Click on Bulletin board-) Bulletin Board. " http://specialneedsnurse.org/ipw-web/bulletin/bb/index.php ****************************************************** ****************************************************** Assocations: Alliance of Genetic Support Groups: A nonprofit, tax exempt organization founded in 1986 as a national coalition of consumers, professionals and genetic support groups to voice the common concerns of children, adults and families living with, and at risk for, genetic conditions. http://www.medhelp.org/geneticalliance/ ****************************************************** The Arc:"The Arc was founded in 1950 by a small group of parents and other concerned individuals. At that time, little was known about the condition of mental retardation or its causes, and there were virtually no programs and activities in communities to assist in the development and care of children and adults with mental retardation and to help support families. In the early days the association worked to change the public's perception of children with mental retardation and to educate parents and others regarding the potential of people with mental retardation. The Arc also worked to procure services for children and adults who were denied day care, preschool, education and work programs." The Arc (a national organization on mental retardation) 1010 Wayne Ave Silver Spring MD 20910 Phone #: 301-565-3842 800 #: 800-433-5255 e-mail: info@thearc.org http://thearc.org/ ****************************************************** Arizona Spina Bifida Association:"The Arizona Spina Bifida Association enhances the quality of life for those living with spina bifida by providing services and information. The Arizona Spina Bifida Association is a nonprofit 501(c)(3)organization. 100% of funds raised in Arizona stay in Arizona." Arizona Spina Bifida Association 1001 East Fairmount Avenue Phoenix, Arizona 85014 602-274-3323 http://www.azspinabifida.org ****************************************************** Association of Birth Defect Children (ABDC): A charitable organization started by parents in 1982. ABDC is primarily supported through memberships and donations from the public. ABDC provides free phone information to parents and professionals about all kinds of birth defects, resources, support groups and environmental exposures that may cause birth defects. http://www.birthdefects.org/main.htm ****************************************************** Children's Craniofacial Association:"Children's Craniofacial Association is a national, 501(c)3 nonprofit organization, headquartered in Dallas, Texas, dedicated to improving the quality of life for people with facial differences and their families. Nationally and internationally, CCA addresses the medical, financial, psychosocial, emotional, and educational concerns relating to craniofacial conditions. CCA's mission is to empower and give hope to facially disfigured children and their families." Children's Craniofacial Association 13140 Coit Road Dallas TX 75240 Phone #: 214-570-9099 800 #: 800-535-3643 e-mail: contactcca@ccakids.com http://www.ccakids.com ****************************************************** Congenital Heart Anomalies, Support, Education, & Resources (CHASER):"CHASER specializes in children born with congenital heart defects (CHD), "in utero to adult", and also acquired heart disease in infants and children. The primary purpose of the organization is to offer parents, professionals and patients, resources that may help these individuals in their dealings with financial, educational, medical, emotional and other issues that may concern them. CHASER is in essence working to fill a void which exists for many." Congenital Heart Anomalies, Support, Education, & Resources (CHASER): 2112 North Wilkins Road Swanton OH 43558 phone# (419) 825-5575 fax # (419) 825-2880 e-mail: chaser@compuserve.com http://www.csun.edu/~hfmth006/chaser ****************************************************** FACES: The National Craniofacial Association:"Over 82,000 babies are born each year with some type of anomaly affecting their face, head, and/or neck. Parents of these children need somewhere to turn for valuable information and words of reassurance. FACES Can Help. For over 34 years, FACES: The National Craniofacial Association has been dedicated to assisting children and adults who have craniofacial disorders resulting from disease, accident, or birth." FACES: The National Craniofacial Association P.O. Box 11082 Chattanooga TN 37401 Phone #: 423-266-1632 800 #: 800-332-2373 e-mail: faces@faces-cranio.org http://www.faces-cranio.org ****************************************************** Genetic Alliance:"The Genetic Alliance is an international coalition comprised of millions of individuals with genetic conditions and more than 600 advocacy, research and health care organizations that represent their interests. As a broad-based coalition of key stakeholders, the Alliance builds partnerships to promote healthy lives for all those living with genetic conditions. Our guiding principles are a dynamic statement of the mission and vision that infuse all Alliance endeavors. With a 16-year history as a 501(C)(3) not-for-profit, the Alliance identifies solutions to emerging problems and endeavors to reduce obstacles to rapid and effective translation of research into accessible technologies and services." Genetic Alliance 4301 Connecticut Avenue NW Washington DC 20008-2304 Phone #: 202-966-5557 800 #: 800-336-4363 e-mail: info@geneticalliance.org http://www.geneticalliance.org ****************************************************** Little People of America (LPA):"Little People of America (LPA) is a nonprofit organization that provides support and information to people of short stature and their families. Here you'll find resources pertaining to dwarfism and LPA, medical data, instructions on how to join an e-mail discussion group, and links to numerous other dwarfism-related sites. Enter, learn, and enjoy!" Little People of America, Inc. P.O. Box 65030 Lubbock TX 79464-5030 Phone #: 806-687-1840 800 #: 888-572-2001 e-mail: lpadatabase@juno.com http://www.lpaonline.org ****************************************************** March of Dimes Birth Defects Foundation:"March of Dimes researchers, volunteers, educators, outreach workers and advocates work together to give all babies a fighting chance against the threats to their health: prematurity, birth defects, low birthweight. Parent Education The March of Dimes helps pregnant women know what to worry about and what not to worry about when it comes to having a healthy baby. Through our Pregnancy & Newborn Health Education CenterSM women can get free one-on-one, confidential answers to their questions about pregnancy, preconception, newborn screening and related topics. The Center also provides a wide variety of materials including mama, an annual magazine full of practical and important information for parents-to-be, are available. E-mail the center at askus@marchofdimes.com." March of Dimes Birth Defects Foundation 1275 Mamaroneck Avenue White Plains NY 10605 Phone #: 914-428-7100 800 #: 888-663-4637 e-mail: Askus@marchofdimes.com http://www.marchofdimes.com ****************************************************** National Institute of Arthritis and Musculoskeletal and Skin Diseases:"The mission of the National Institute of Arthritis and Musculoskeletal and Skin Diseases is to support research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases, the training of basic and clinical scientists to carry out this research, and the dissemination of information on research progress in these diseases." Office of Communications and Public Liaison, National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institute of Health Bldg. 31, Room 4C02 31 Center Dr. - MSC 2350 Bethesda, MD 20892-2350 Phone: (301) 496-8190, Fax: (301) 480-2814, 800 #: 877-226-4267 e-mail: niamsinfo@mail.nih.gov http://www.niams.nih.gov ****************************************************** The Preemie Ring (Webring.org Hub):"The Preemie Ring was launched February 1997. This is a collection of home pages about premature infants and premature infant care, etc. Some preemies in the ring were born about 4 months early, weighing less than 2 pounds at birth! Non-commercial sites." http://hub.webring.org/hub/preemie ****************************************************** ****************************************************** Conditions: Acyanotic Congenital Heart Disease: Loyola University Medical Education Network. Detailed diagrams included. http://www.meddean.luc.edu/develop/tcarr/begin.htm ****************************************************** Congenital Heart Research Center: http://www.ohsu.edu/chrc/chrc3.html ****************************************************** Congenital Heart Disease Ring: http://www.webring.org/cgi-bin/webring?ring=littlehearts&list ****************************************************** Hydrocephalus, Syrinx, Myelomeningocele Resource Guide: http://neurosurgery.mgh.harvard.edu/hyd-rsrc.htm ****************************************************** German measles, also known as Rubella: http://tqd.advanced.org/3361/measles.html ****************************************************** Larsons Syndrome (Larsens), Birth Defects, Congenital Abnormalities, Direct Patient Care Resources http://www.nursefriendly.com/larsens ****************************************************** Myelomeningocele: Defined. http://www.icondata.com/health/pedbase/files/MYELOMEN.HTM ****************************************************** Myelomeningocele (children): http://www.healthanswers.com/database/ami/converted/001558.html ****************************************************** Spina Bifida (What is?): Detailed diagrams provided. http://firebar.sasknet.sk.ca/~sbass/definitions.html ****************************************************** Spina Bifida (What is?) II: The Gait Analysis Laboratory at Children's Memorial Hospital in Chicago. http://www.childrensmemorial.org//cmhweb/CMHDepts/GaitLab/mminfo.html ****************************************************** ****************************************************** ****************************************************** Diagnostics: Amniocentesis: Public Health Education Information Sheet http://noah.cuny.edu/pregnancy/march_of_dimes/testing/amniocen.html ****************************************************** Chorionic Villus Sampling Birth Defects Registry: http://neuro-www3.mgh.harvard.edu/cvs/cvs.html ****************************************************** Fetal Ultrasound: The Screening Examination: http://www.fetal.com/screen.htm ****************************************************** Maternal Serum Alpha-Fetoprotein (MSAFP): Public Health Education Information Sheet http://www.noah.cuny.edu/pregnancy/march_of_dimes/testing/modafp.html ****************************************************** Screening for Neural Tube Defects -- Including Folic Acid/Folate Prophylaxis: http://cpmcnet.columbia.edu/texts/gcps/gcps0052.html ****************************************************** Testing for a Healthy Baby: Iowa Health Book: Pediatrics http://www.vh.org/Patients/IHB/Peds/Disabilities/NewbornScreening.html ****************************************************** Ultrasound Images Of The Fetus: http://www.fetal.com/uspict2.htm ****************************************************** Documentation: California Expanded AFP Screening Program: Consent/Refusal Form. http://www.fetal.com/consent.htm ****************************************************** Risk Factors: Chorionic Villus Sampling Birth Defects Registry: http://neuro-www3.mgh.harvard.edu/cvs/cvs.html ****************************************************** CDC NCEH: Division of Birth Defects and Developmental Disabilities: http://www.cdc.gov/nceh/about/org/bddd.htm ****************************************************** Drugs, Alcohol, and Cigarette Smoking During Pregnancy: http://babyzone.com/drugs.htm ****************************************************** Endocrinology and Birth Defects: This fact sheet is a product of the Research Professional Activities Committee and the Public Communications Committee of The Endocrine Society. http://www.endo-society.org/pubaffai/factshee/birthdef.htm ****************************************************** Prenatal Screening: General Interest Topics http://www.ntdlaboratories.com/discussion.html ****************************************************** Prevention of Neural Tube Defects: http://TheArc.org/faqs/folicqa.html ****************************************************** Study outlines the high cost of treating common birth defects: http://detnews.com/menu/stories/17767.htm ****************************************************** See also: Carrots for mom: University of Southern California Chronicle. http://cwis.usc.edu/dept/News_Service/chronicle_html/1996.04.22.html/Carrots_for_mom.html ****************************************************** Parents Place.com: Pregnancy, Parenting, Parents, Baby, Pregnancy, Kids, Family http://www.parentsplace.com/ ****************************************************** Pediatric Database (PEDBASE): Contains descriptions of over 550 childhood illnesses and has been on the Internet since November 15, 1995. http://www.icondata.com/health/pedbase/pedlynx.htm ****************************************************** Professor to continue probe of anencephalic border births: http://www.uth.tmc.edu/uth_orgs/pub_affairs/uthouston/jan_97/anencep.html ****************************************************** Larsons Syndrome (Larsens), Birth Defects, Congenital Abnormalities, Direct Patient Care Resources http://www.nursefriendly.com/larsens ****************************************************** ****************************************************** ****************************************************** For Health Information you can use, Follow, Connect, Like us on (Most Invites Accepted): http://www.nursefriendly.com/social/: Twitter! http://www.nursefriendly.com/twitter What's New Blogger: http://4nursing.blogspot.com Facebook: http://www.nursefriendly.com/facebook Linked In: http://www.linkedin.com/in/nursefriendly Nursing Entrepreneurs, Nurses In Business, http://nursingentrepreneurs.ning.com/ Posterous.com, http://nursefriendly.posterous.com StumbleUpon, http://www.nursefriendly.com/stumbleupon ****************************************************** If your website is not listed here, we encourage you to submit it: Add Your Website/URL. See also: Nursing Topics, A to Z: Nursing Degrees, LPN-RN, RN-BSN, RN-MSN, Online/Offline College, University and more!:"Higher income. Career mobility. Now, no matter where you live or what your schedule, you can earn your Associate or Bachelor Degree to take your professional life to the next level — without putting the rest of your life on hold!" If you do any Browsing or Windowshopping online, please visit our online Mall: http://www.nursefriendly.com/shopping/ Gifts For Nurses: http://www.nursefriendly.com/gifts/ 4nursinguniforms.com:"Choose from Top Nursing Uniform Companies. All sizes, styles and popular name brands available. Large selection of accessories as well: Accessories Blood Pressure Cuffs, Sphygnomanometers Nursing Tote Bags, Carry-Ons, Medical Bags Clinical, Medical Supplies, Nurses Discount Outlet: Angels, Books, Clothing , Equipment, Figurines, Holidays, Home Decor, Jewelry, Nurses, Office Decor, Scrubs, Shoes, T-Shirts Footwear, Shoes, Sandals, Discount, Bargains Gifts For Nurses (Nurses Week) Hosiery, Socks, Stockings Hats, Jackets, Jumpers Jewelry, Earrings, Necklaces, Watches Luxury Spas, Facials, Manicures, Pedicures Perfumes, Fragrances, Phermones Shoes, Boots, Sandals, Footwear, High Heels, Slippers Stethescopes, Nurse Kits, Replacement Parts Swimwear (Tan-Through) Women's Lingerie " 4nursinguniforms.com ****************************************************** Nursing Chat, Nurse Discussion Forums: http://nursingdiscussions.com ******************************************************

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Created on June 16, 1999

Last updated by Andrew Lopez, RN on March 13, 2023

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