41. Conosciamocimeglio.it Propone siti di ricercaincontro per conoscere meglio lo stato di salute e la qualit  di vita delle persone affette dalle sindromi di Down e di Noonan, da spina bifida e da febbri periodiche. Informazioni, bibliografia e Faq. http://www.down.conosciamocimeglio.it/

Cattedra di Pediatria Università Cattolica Policlinico A. Gemelli - Roma Informazioni per le iscrizioni Avviso: le iscrizioni al sito di ricerca sociosanitaria www.conosciamocimeglio.it non sono ancora attive. In collaborazione con ForumPA Aderiamo ai principi HONcode Webmaster

42. EESSCF Le Trèfle Tournai - Chièvres Etablissement d'Enseignement Secondaire Sp©cialis© de la Communaut© Fran§aise du Hainaut occidental (Belgique). Offre un enseignement secondaire de types occupationnel, professionnel ou de qualification   des adolescent(e)s IMC, spina bifida, myopathes, h©mi, bi- ou t©trapl©giques. http://users.skynet.be/letrefle/

Etablissement d'Enseignement Secondaire Spécialisé de la Communauté Française Le Trèfle Tournai - Chièvres Veuillez cliquer sur le bouton de mode d'affichage correspondant au paramétrage de votre écran pour entrer

43. Richard Malone Interests are fishing, golf and the spina bifida Association. http://www.ezy.net/~malone

Richard's Playroom This is Richard Malone 's home page. Interests: My Kids ! Bass Fishing my picture album Golf Computers Electronics Ham Radio (N3FIF) National Organizations: B.A.S.S. The March of Dimes Local Organizations: Spina Bifida Association of the Eastern Shore Eastern Shore Chapter of the March of Dimes Y.E.S. Inc., Youth Exercise Services The Wicomico Bass Club The Delaware B.A.S.S. Federation Comments: I'll be the first to admit I'm in the RACE ! The RACE being that race where the one with the most toys wins ! Look around and if the urge strikes you, drop a line to malone@ezy.net Here's a few other links: B.A.S.S. The Wicomico Bass Club Home Page Bass Fishing Home Page Intellicast Weather Radar ... The Delaware Bass Federation Local Organizations Making a Difference! The Spina Bifida Association of the Eastern Shore The March of Dimes Youth Exercise Inc. (Y.E.S.) Please email comments and corrections to malone@ezy.net Please sign my guestbook ! Number Visited Last updated September 11, 2000

44. Spina Bifida Pers¶nliche Hompage ¼ber Danara, die mit offenem R¼cken auf die Welt gekommen ist. http://www.idcmp.de/Spina_Bifida/spina_bifida.html

Die aktuellen Aussichten Spina Bifida Meine erste Bekanntschaft mit Spina Bifida und die Geburt unserer Tochter Danara Doreen Bei einer routinemäßigen Ultraschalluntersuchung bei unserem ungeborenen Kind stellte der Frauenarzt meiner Freundin eine Unregelmäßigkeit an der Wirbelsäule des Kindes fest. Da er sich aber nicht sicher war, worum es sich handelte, bekamen wir eine Überweisung zu einem Frauenarzt in Hannover der sich mit so etwas besser auskennen sollte. Nach einer sehr genauen Ultraschalluntersuchung durch Dr. Schwerdtfeger in Hannover teilte dieser uns mit, das unser Kind einen Defekt im Rückenbereich hat. Einen sogenannten “ Offenen Rücken”. Erst einmal brach für uns eine Welt zusammen, wir hatten nie auch nur einen Gedanken daran verschwendet, das unser Kind nicht gesund sein könnte. Doch jetzt sollte alles ganz anders sein. Ich glaube, das was uns so zermürbt hat war, das uns niemand unsere ganzen Fragen beantworten konnte. Wird unser Kind je Laufen können ? Wird es eine Chance im Leben haben ? Und viele anderer solcher Fragen standen für uns offen. Dr. Schwerdtfeger hatte uns zwar gesagt, das es auf jedenfall mit einem Kaiserschnitt zur Welt kommt und das es nach der Geburt sofort operiert werden muss, aber was passiert danach mit unserem Kind. Er meinte zwar, das es ein gutes Zeichen wäre, das unser Kind die Beine im Mutterleib selbstständig bewegt, aber das war für uns nur ein schwacher Trost. Zur Zeit heisst es wohl einfach nur abwarten.

45. Discovering Spina Bifida Web Ring This web ring is dedicated to sharing our testimonies about spina bifida. Discoveringspina bifida Webring. The Purpose of this Web Ring. http://www.geocities.com/Heartland/Fields/6980/webring.html

Discovering Spina Bifida Webring The Purpose of this Web Ring The DISCOVERING SPINA BIFIDA WEB RING is dedicated to sharing our testimonies about Spina Bifida. It contains web pages of parents of children with Spina Bifida, families with a loved one with Spina Bifida, individuals with Spina Bifida and anyone who is friends with someone who has Spina Bifida. Also, it can contain pages about related conditions such as hydrocephalus, latex precautions/allergies, tethered cord, Arnold Chiari malformation, lipomyelomeningocele, spina bifida occulta, anencephaly, ambulatory needs, etc. The purpose of the DISCOVERING SPINA BIFIDA WEB RING is to provide support to those who have or those who have a loved one with Spina Bifida, to promote awareness about the disABILITY and to discover the wonderful opportunities we share. Guidelines for Joining Your web site must contain information regarding Spina Bifida or a related condition. All sites should be "G" rated. No profanity, adult content nor any links to such sites. Fill out and submit the application form.

46. Arizona Spina Bifida Association Provides information and resources related to spina bifida in Arizona. http://azspinabifida.org

Information and services regarding spina bifida and associated secondary conditions. Resources available in Arizona. If you are viewing this text, your browser lacks the ability to read frames. Don't worry, you can still enjoy our site. All the pages can be viewed from the contents page. Please come inside! Contents

47. National Center For Medical Rehabilitation Research (NCMRR) Funds research in the rehabilitation of impairment, disability and handicap; including that due to spinal cord injury, brain injury, stroke, amputation, cerebral palsy, spina bifida, and other disabling conditions. http://www.nichd.nih.gov/about/ncmrr/ncmrr.htm

Home Search Sitemap Contact ... Organization National Center for Medical Rehabilitation Research (NCMRR) Board Publications about NCMRR Seven Priority Areas Funding Opportunities ... Intramural Research and Training Opportunities in Rehabilitation Research Proceedings of the NCMRR Symposium , January 4-5, 2001. History and Mission The National Center for Medical Rehabilitation Research (NCMRR) was established within the National Institutes of Health (NIH) by legislation (P.L. 101-613) passed in 1990. The Center is a component of the National Institute of Child Health and Human Development (NICHD). The mission of NCMRR is to foster development of scientific knowledge needed to enhance the health, productivity, independence, and quality of life of persons with disabilities. This is accomplished by supporting research on enhancing the functioning of people with disabilities in daily life. A primary goal of the Center is to bring the health related problems of people with disabilities to the attention of America's best scientists in order to capitalize upon the myriad advances occurring in the biological, behavioral, and engineering sciences. NICHD Home NIH Home DHHS Home Accessibility ... Top of Page

48. Keith Piskur's Den Features information about spina bifida and other disabilities. http://come.to/keiths_page

V3.com : domain names, personal emails, url forwarding Keith Piskur's Den Personal page about me with info on my disabilities, abuse/assualt survivor/secondary survivor info Click here to continue

49. Redirection Vers Spina Bifida (Suisse) http://www.geneva-link.ch/dupuism/

50. Family Village / Spina Bifida spina bifida See also Latex Allergy. They serve the parents of children with spinabifida, adults with spina bifida and professional who work with them. http://www.familyvillage.wisc.edu/lib_spin.htm

Spina Bifida See also Latex Allergy Who to Contact Where to Go to Chat with Others Learn More About It ... Search AltaVista for "Spina Bifida" Who to Contact Spina Bifida Association of America (SBAA) 4590 McArthur Blvd., NW, Suite 250 Washington, D.C., USA 20007-4226 Fax: (202) 944-3295 E-mail: sbaa@sbaa.org Web: http://www.sbaa.org/ The Spina Bifida Association of America's mission is to promote the prevention of spina bifida and to enhance the lives of all affected. They promote public awareness, and provide funding for research. They have local chapters and a directory is available. Contact the national office at the above address for information concerning a chapter in your locality. They will provide assistance to individuals who wish to start a support group in their locality. The Association provides educational scholarships. Call their 800 number or write to the above address for further information. SBAA publishes a bi-monthly newsletter, SBAA Insights , that is a benefit of membership. They also have brochures including, " Educational Issues among Children with Spina Bifida," "Latex (natural rubber) Allergy in Spina Bifida Patients,"

51. Pediatric And Adolescent Rehabilitation Facility specializes in the care of children and adolescents with conditions including traumatic or acquired brain injury, spinal cord injury, burns, multiple orthopedic trauma, neuromuscular disorders, spina bifida, and cerebral palsy. http://www.clarian.org/clinical/pediatrics/methodist_ped_rehab.jhtml

Patients Physicians Employees Monday March 31, 2003 Register Now to use My Clarian for personal healthcare management. User Name Password Arthritis Care Center Cancer Center Cardiovascular Center Dermatology ... Women's Services Pediatrics Methodist Hospital Pediatric and Adolescent Rehabilitation Program We provide a complete array of therapies to rehabilitate children from birth to adolescence. Our goal is to help children return to their lives of regular routine with their families, schools and communities. We provide inpatient, outpatient and day treatment services. About the Program Our rehabilitation program is an integral part of Clarian Health, which brings together the skills and services of Methodist Hospital, IU Hospital and Riley Hospital for Children. Our program unites advanced facilities with an integrated, family-centered approach to rehabilitative care, unmatched in the region. The physicians, therapists, psychologists, social workers, teachers and nurses on our team are committed to achieving the best results for the children and families in their care at affordable costs. We are well aware of the financial, as well as the emotional, burden that such care can place on families. In fact, many of our distinctive specialty therapies, such as music therapy and pet therapy, are provided at no cost. Our focus is on what is right for the young people in our care to help them live the full lives we would wish for our own children. The safety and security of the children in our care is of utmost importance. We realize what a difficult— and sometimes life-altering— time this can be. We use a holistic approach to meet all of their physical, emotional, mental and behavioral needs. Put simply, every child will be treated with respect, dignity and care.

52. Resources For People Interested In Spina Bifida & Related Disorders . . Resources for People Interested in spina bifida Related Disorders. SpinaBifida spina bifida Association of America Web Site http//www.sbaa.org. http://www.familyvillage.wisc.edu/spinabifida.html

An Internet Guide . . . Resources for People Interested in By Linda Rowley - Coordinator of the Family Village Project http://www.familyvillage.wisc.edu/ Updated September 1998 This list is designed to give individuals a starting point for their exploration of the Internet. It is not intended to be a comprehensive list. If you know of other on-line discussion groups or web sites that should be included in future updates of this list please contact Linda Rowley at rowley@waisman.wisc.edu. I World Wide Web Sites Spina Bifida: Spina Bifida Association of America Web Site http://www.sbaa.org Spina Bifida Association of America Chapter List http://www.sbaa.org/Chapter.htm Spina Bifida Clinics - United States http://www.sbaa.org/clinics.htm Children with Spina Bifida: A Resource Page for Parents http://www.waisman.wisc.edu/~rowley/sb-kids/ Hydrocephalus: The Hydrocephalus Foundation http://neurosurgery.mgh.harvard.edu/HyFI/ Steve's Hydrocephalus Page http://web.syr.edu/~sndrake/hyd1.htm Arnold Chiari: World Arnold Chiari Malformation Association Web Site http://www.pressenter.com/~wacma/

53. Page D'accueil FFASB site officiel. http://membres.lycos.fr/FFASB/

Page d'accueil

54. Spina Bifida Association Of Victoria: Home Welcome to the spina bifida Association of Victoria! We are the Victorian selfhelp group for persons with spina bifida, their families and communities. http://www.sbav.org.au/

Welcome to the Spina Bifida Association of Victoria! We are the Victorian self help group for persons with spina bifida, their families and communities. The SBAV conducts 3 key activities: Personal support and advocacy Information provision and communication Community education On this website you will find: Useful resources explaining spina bifida and hydrocephalus Educational resources for students and teachers News and events Our newsletter Contact Medical, and latest research information and links How to become a member How to make a donation Our website has been designed as an information resource for: People with spina bifida People working with or caring for persons with spina bifida Students and others seeking information about the condition, its treatment, and management. Click here to go to Introducing the Spina Bifida Association of Victoria brochure Search Alta Vista for more on About SBAV Spina Bifida Facts Publications News and Events ... Spina Bifida Foundation You can contact us by sending email to our mailbox Please note: All information is provided in good faith but we take no responsibility for it's accuracy or use.

55. Illinois Spina Bifida Association A non-profit organization dedicated to improving the quality of life of people with spina bifida through Category Regional North America Neurological Disorders......The Illinois spina bifida Association® (ISBA) is a nonprofit organization dedicatedto improving the quality of life of people with spina bifida through http://www.illinoisspinabifidaassociation.com/

The Illinois Spina Bifida Association® (ISBA) is a non-profit organization dedicated to improving the quality of life of people with spina bifida through direct services, information, referral, research, and public awareness Spina bifida is the failure of the spine to close properly during the first month of pregnancy and results in varying degrees of paralysis, loss of sensation in the lower limbs, difficulty with bowel and bladder management, hydrocephalus, and learning disabilities. It takes a team of parents, doctors, therapists, teachers and others to help a person with spina bifida achieve maximum potential. But with proper attention, that person's potential is unlimited. The cause of spina bifida is unknown, and the scientific community is unable to explain whether the determinants of spina bifida are genetic or environmental. Recent scientific research, however, shows that folic acid, a common B vitamin, may prevent more than half of all spina bifida births. According to the United States Center for Disease Control, if all women of childbearing age in the United States who are capable of becoming pregnant would consume 0.4 mg. of folic acid per day, the incidence of spina bifida could be reduced by over 70%. Background: The ISBA was founded in 1969 as a 501(c)3 non-profit social and health services advocacy organization, providing programs and direct services that help individuals with spina bifida live to their fullest potential. The mission, of the ISBA is to improve the quality of life for people with spina bifida and their families through direct services, information, referrals, and public awareness. The ISBA currently operates twenty-two (22) programs for nearly 1,000 families in Illinois, most of whom live in the greater Metropolitan Chicago area. The ISBA currently manages its programs and direct services with only two staff members, one full time and one part-time, and with the assistance of many volunteers.

56. Neuroscience For Kids - In The News - Fetal Surgery For Spina Bifida Fetal Surgery for spina bifida, spina bifida is a relatively common birth defectwhich occurs in 1 to 2 of every 1,000 babies born in the United States. http://faculty.washington.edu/chudler/spibi.html

Fetal Surgery for Spina Bifida November 18, 1999 Spina bifida is a relatively common birth defect which occurs in 1 to 2 of every 1,000 babies born in the United States. "Spina bifida" literally means "split spine"; it is caused by failure of the spinal cord to develop properly. The nervous system develops from embryonic tissue called the ectoderm. The first sign of the developing nervous system is the neural plate which can be seen at about the 16th day of development. Over the next few days, a "trench" is formed in the neural plate - this creates a neural groove. By the 21st day of development, a neural tube is formed when the edges of the neural groove meet. The rostral (front) part of the neural tubes goes on to develop into the brain and the rest of the neural tube develops into the spinal cord. Spina bifida occurs when the neural tube is not formed properly; the bones of spinal column (the vertebrae) and muscle fail surround the spinal cord properly. No one knows exactly what causes spina bifida, but it is thought that both environmental and genetic factors play a role. Development of the Nervous System Skull and Vertebrae Failure of the neural tube to develop properly may result in three different conditions that lead to spina bifida: spina bifida occulta - the mildest form of spina bifida in which one or more vertebrae are malformed. These vertebrae are covered by a layer of skin.

57. SPINA BIFIDA ASSOCIATION OF THE TRI-STATE REGION spina bifida ASSOCIATION OF THE TRISTATE REGION. Our Mission, To empowerthe lives of people with spina bifida through advocacy, education http://www.sbatsr.org/

SPINA BIFIDA ASSOCIATION OF THE TRI-STATE REGION Ashley Rose Resource Room Board of Directors Calendar of Events SBA-TSR Newsletter ... What is Spina Bifida? Message Forum Consumer Council Live Chatroom! Our Mission "To empower the lives of people with spina bifida through advocacy, education, public awareness, research and programs, and to promote the prevention of spina bifida." The Spina Bifida Association Tri-State Region (SBA-TSR) provides activities and programs that directly benefit the residents of the state of New Jersey, metro New York, and southern Connecticut. The mission of SBA-TSR is to empower the lives of people with spina bifida through advocacy, education, public awareness, research, and programs, and to promote the prevention of spina bifida . SBA-TSR is an affiliate of the Spina Bifida Association of America Interested in SBA-TSR's Teleconferences? Click here for more information. "GREAT THINGS ARE HAPPENING AT SBA-TSR" April 6, 2003 - Volunteer Recognition and Annual Meeting April 8, 2003 - Retreat

58. Associazione Toscana Spina Bifida E Idrocefalo (A.T.I.S.B.) L'associazione toscana spina bifida ed idrocefalo fornisce agli associati supporto medico specializzato, favorisce lo scambio di esperienze e promuove campagne di sensibilizzazione ed informazione sulle nuove tecnologie mediche, farmacologiche e chirurgiche. http://www.comune.prato.it/associa/atisb/home.htm

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59. The Spina Bifida And Hydrocephalus Association Of SA - What Is Spina Bifida http://www.spinabifida.asn.au/

60. Julia's Journey With Spina Bifida Support and information written by a parent, for families who have children with the birth defect spina bifida or hydrocephalus. http://www.geocities.com/Heartland/Fields/6980/

to Julia's Journey "The real voyage of discovery consists not in seeking new landscapes, but in having new eyes." M. Proust Throughout you will read stories and information that will hopefully help out and give you some expectations of what's ahead. It will also provide support for new, seasoned parents and loved ones. It will also touch briefly on the scientific aspects of Spina Bifida and Hydrocephalus. However, my main purpose is to share what my family and I felt when we first found out about our daughter and how we continue to feel. I hope you find it comforting, encouraging, informing and strengthing. Additionally and most importantly, I hope this site will make you feel like you're not alone. Remember nothing is written in stone here. Feel WHAT you WANT to feel WHEN you are ready and not a second sooner. If you are just finding out, it's a tough time right now, but in time, your child will show you that gorgeous rainbow of spectacular discoveries. Mine did and she still is. Finally, please

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