Beckwith-Wiedemann Family Forum

site URL - http://www.geocities.com/beckwith_wiedemann/

Site description: A way for people from around the world who are interested in BWS to get support and share information.




Topic: Top/Health/Conditions_and_Diseases/Genetic_Disorders/Beckwith-Wiedemann_Syndrome
LINKURI & TITLEDESCRIPTION & TOPIC
Previous 10XXY Information (Klinefelter Syndrome)http://www.47xxy.org/XXYframe.html XXY Information (Klinefelter Syndrome)Top/Health/Conditions_and_Diseases/Genetic_Disorders/Klinefelter_Syndrome Medical information, news, and links.
PreviousNational Library of Medicinehttp://www.nlm.nih.gov/mesh/jablonski/syndromes/syndrome052.html National Library of MedicineTop/Health/Conditions_and_Diseases/Genetic_Disorders/Beckwith-Wiedemann_Syndrome weckwith-wiedemann syndrome, a list of synonyms, a summary and a major features.
Random 1Sanabel Palestinian Debke Grouphttp://www.sanabel-debka.com Sanabel Palestinian Debke GroupTop/Arts/Performing_Arts/Dance/Middle_Eastern/Teachers_and_Performers/United_States/Illinois Chicago based group devoted to the preservation of the Palestinian culture, via debka, the traditional Palestinian form of dance. Performance schedule is included.
Random 2Optim Incorporatedhttp://www.optimnet.com/ Optim IncorporatedTop/Regional/North_America/United_States/Massachusetts/Localities/S/Sturbridge/Business_and_Economy Develops, manufactures, markets, sells and services flexible endoscopic and illumination products and solutions to medical, industrial and repair markets.
Random 3Hannah Pettyhttp://www.crystalclearskin.com/ Hannah PettyTop/Shopping/Health/Beauty/Skin_Care/Non-Toxic Anti-bacterial crystal for a natural deodorant, foot powder, and other topical treatments.
Random 4The Roots of ALShttp://apu.sfn.org/content/Publications/BrainBriefings/als.html The Roots of ALSTop/Health/Conditions_and_Diseases/Neurological_Disorders/Amyotrophic_Lateral_Sclerosis Society for Neuroscience, Brain Briefings.
Random 5IGR Enterpriseshttp://www.igroxygen.com/ IGR EnterprisesTop/Business/Healthcare/Products_and_Services/Medical_Equipment/Manufacturers Developer of electronic solid-state oxygen generation technology. Self-sustaining oxygen generating systems for medical and industrial use.
NextBeckwith-Wiedemann Support Grouphttp://www.ukindex.info/bwsg Beckwith-Wiedemann Support GroupTop/Health/Conditions_and_Diseases/Genetic_Disorders/Beckwith-Wiedemann_Syndrome UK based support group. Offers a database of information and puts parents in contact with others in their locality.
Next 10Von Hippel-Lindau Diseasehttp://www.ninds.nih.gov/health_and_medical/disorders/vonhippe_doc.htm Von Hippel-Lindau DiseaseTop/Health/Conditions_and_Diseases/Genetic_Disorders/Von_Hippel-Lindau Information sheet on this disease compiled by NINDS, the National Institute of Neurological Disorders and Stroke.
Random 1Animismhttp://www.animism.net/ AnimismTop/Arts/Animation/Anime/Multimedia MP3s, winamp skins, wallpapers, and web graphics.
Random 4Shifted Sandshttp://www.shiftedsands.com/ Shifted SandsTop/Shopping/Health/Alternative/Energy_Healing Takionic products to increase strength, endurance, stamina, and Chi energy. Includes clothing, beads and jewelry, and books.
Random 4Date Matehttp://kennys-ins.com/pher.html Date MateTop/Shopping/Health/Reproduction_and_Sexuality/Aphrodisiacs/Pheromones Featuring human cologne.
Next 70THCME Medical Biochemistry Page: Fatty Acid Oxidationhttp://web.indstate.edu/thcme/mwking/fatty-acid-oxidation.html THCME Medical Biochemistry Page: Fatty Acid OxidationTop/Health/Conditions_and_Diseases/Genetic_Disorders/Fatty_Oxidation An introduction, mobilization of fat stores, oxidation reactions, alternative oxidation pathways, regulation of fatty acid metabolism, clinical aspects of fatty acid metabolism, ketogenesis, regulation of ketogenesis, and clinical significance of ketogenesis.
Previous 70Elizabeth Nash Foundationhttp://elizabethnashfoundation.org Elizabeth Nash FoundationTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Organizations Supports causes reflective of Elizabeth Nash's interests and values with a specific emphasis on efforts that improve the lives of those affected by Cystic Fibrosis.
Next 170NORD: Smith Lemli Opitz Syndromehttp://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Smith%20Lemli%20Opitz%20Syndrome NORD: Smith Lemli Opitz SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Smith_Lemli_Opitz_Syndrome Offers a brief description, the synonyms and further resources.
Previous 170Cystic Fibrosis informationhttp://cfinformer.tripod.com/ Cystic Fibrosis informationTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Personal_Pages These pages are intended for world wide web as a resource of information on Cystic Fibrosis in English and Dutch they also link to other resources on Cystic Fibrosis.
Next 270
Previous 270Darbi's Placehttp://coolbeansdesigns.com/darbisplace/index.htm Darbi's PlaceTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Personal_Pages Pictures, a mom's story, and information about about Darbi's open heart surgery.
Other resource N0 Ellehttp://mysite.freeserve.com/elles_page ElleTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Personal_Pages Story of her mother's pregnancy, and thoughts about Down Syndrome.
Other resource N1 The Story of Kathlyn "Pooh"http://home.insightbb.com/~momapoohbear/kathlyn.html The Story of Kathlyn "Pooh"Top/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Personal_Pages The Miracle of Kathlyn Justice Marie.What she went though in her short life and the memories she left behind. Written by her mother.
Other resource N2 Down Syndrome : A Parent's Resourcehttp://www3.sympatico.ca/terry.edwards/Shelby.html Down Syndrome : A Parent's ResourceTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Personal_Pages Information about Down Syndrome, and a collection of parents' stories.
Other resource N3 The National University Hospital Turner Support Grouphttp://www.med.nus.edu.sg/paed/tsgweb/tsg.html The National University Hospital Turner Support GroupTop/Health/Conditions_and_Diseases/Genetic_Disorders/Turner_Syndrome For patients with Turner Syndrome and their families, combined with the pharmaceutical company Serono Singapore Pte. Ltd. to co-organise biannual meetings and parties for the group.
Other resource N4 Turner Syndrome: Toward Early Recognition and Improved Outcomeshttp://www.medscape.com/viewprogram/2155 Turner Syndrome: Toward Early Recognition and Improved OutcomesTop/Health/Conditions_and_Diseases/Genetic_Disorders/Turner_Syndrome Detailed overview of this condition, including clinical features, genetics, diagnosis, defects and medical problems associated with the syndrome, and recommendations for treatment. Includes many photos. [Requires free registration.]
Other resource N5 NORD - Turner Syndromehttp://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Turner%20Syndrome NORD - Turner SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Turner_Syndrome Offers alternative names, a general discussion and further resources.
Other resource N6 Alkaptonuriahttp://www.kfshrc.edu.sa/annals/185/98-055.html AlkaptonuriaTop/Health/Conditions_and_Diseases/Genetic_Disorders/Alkaptonuria A brief discussion about this disease and its statistics world wide. Followed by a case study of a 4 year old boy, whose parents noted the darkening of the urine to an almost black color when it was left standing.
Other resource N7 The Alkaptonuria Societyhttp://www.alkaptonuria.info/ The Alkaptonuria SocietyTop/Health/Conditions_and_Diseases/Genetic_Disorders/Alkaptonuria An information and support network for those people diagnosed with Alkaptonuria. Includes discussions, articles and related resources.
Other resource N8 XP Support Grouphttp://www.xpsupportgroup.org.uk XP Support GroupTop/Health/Conditions_and_Diseases/Genetic_Disorders/Xeroderma_Pigmentosum UK-based organisation giving support, help and information to those affected by xeroderma pigmentosum and other photosensitive conditions.
Other resource N9 Online Mendelian Inheritance in Man - Xeroderma Pigmentosumhttp://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=278700 Online Mendelian Inheritance in Man - Xeroderma PigmentosumTop/Health/Conditions_and_Diseases/Genetic_Disorders/Xeroderma_Pigmentosum Includes summaries of genetic research results and citations.
Other resource N10 Williams Syndrome Associationhttp://www.williams-syndrome.org/ Williams Syndrome AssociationTop/Health/Conditions_and_Diseases/Genetic_Disorders/Williams_Syndrome A rare genetic condition (estimated to occur in 1/20,000 births) which causes medical and developmental problems.
Other resource N11 Williams Syndromehttp://geocities.com/williamssyndrome/index.html Williams SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Williams_Syndrome About the author's daughter, Sereena Celeste Beech, who has this syndrome.
Other resource N12 NORD : Williams Syndromehttp://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Williams%20Syndrome NORD : Williams SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Williams_Syndrome Offers alternative names, a general discussion and resources.
Other resource N13 Alagille Syndrome Alliancehttp://www.alagille.org/ Alagille Syndrome AllianceTop/Health/Conditions_and_Diseases/Genetic_Disorders/Alagille_Syndrome Worldwide support network for people who care about people with alagille syndrome.
Other resource N14 NORD: Alagille Syndromehttp://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Alagille%20Syndrome NORD: Alagille SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Alagille_Syndrome The synonyms, a general discussion and further resources.
Other resource N15 CF Advantagehttp://wsrv.clas.virginia.edu/~rjh9u/cysfib.html CF AdvantageTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis The mutation that causes deadly cystic fibrosis has survived for 52,000 years - perhaps because it offers protection against diarrhea. By Josie Clausiusz
Other resource N16 MyCysticFibrosis.comhttp://www.mycysticfibrosis.com MyCysticFibrosis.comTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis Personal management tools to help track important health measures, together with in-depth articles and personal support from site specialists. Members can share data with caregivers and their healthcare team.
Other resource N17 Cystic Fibrosis Health FactSheethttp://hcd2.bupa.co.uk/fact_sheets/Mosby_factsheets/Cystic_fibrosis.html Cystic Fibrosis Health FactSheetTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis Concise factsheet on causes, symptoms and treatment of cystic fibrosis, this factsheet can also be downloaded in Acrobat format
Other resource N18 The Breathing Roomhttp://www.thebreathingroom.org The Breathing RoomTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis Guidance about the art of living with cystic fibrosis.
Other resource N19 Jewish Genetic Diseases - Cystic Fibrosishttp://www.mazornet.com/genetics/cystic_fibrosis.asp Jewish Genetic Diseases - Cystic FibrosisTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis Page with basic information on Cystic Fibrosis: symptoms, incidence in people of Jewish descent (Ashkenazi Jews), diagnosis, treatment, and screening.
Other resource N20 Cindy's Friendshttp://www.cindys-friends.com Cindy's FriendsTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis Information about the disease, progress being made towards a cure, and fundraising efforts in Tennessee.
Other resource N21 Cystic Fibrosis Resource Centrehttp://www.cysticfibrosis.co.uk Cystic Fibrosis Resource CentreTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis A source of information for cystic fibrosis patients, parents, doctors and other carers.
Other resource N22 A-Z Directory of Cystic Fibrosis Resourceshttp://www.cellscience.com/CFmain.html A-Z Directory of Cystic Fibrosis ResourcesTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis Biomedical directory with listings of hospitals, charities, research, and information by topic and location.
Other resource N23 University Place Professional Firefighters Union Local 2105 Fund-Raiserhttp://www.piercefire.org/up/new_page_4.htm University Place Professional Firefighters Union Local 2105 Fund-RaiserTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Fund-Raisers Proud sponsor and an active fund-raiser for the Cystic Fibrosis foundation for 5 years - there are two annual events - Pizza Take Over Night at the Round Table Pizza Parlor on Bridgeport Way and Tee-Shirt sale.
Other resource N24 Richard Shannon Lung Transplant Fundhttp://www.shannonlungs.org/index.html Richard Shannon Lung Transplant FundTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Fund-Raisers Richard Shannon has Cystic Fibrosis. He is on the list for a lung transplant. A fund raiser is ongoing to pay for expenses beyond what insurance covers. Prayers and contributions are helpful.
Other resource N25 Academy Galahttp://www.academygala.com Academy GalaTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Fund-Raisers Information about this annual Hollywood event. Proceeds benefit the Cystic Fibrosis Foundation.
Other resource N26 Music for Harryhttp://www.musicforharry.org.uk Music for HarryTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Fund-Raisers Describes charity music projects which raise money for children with cystic fibrosis. Made a donation online.
Other resource N27 The Cystic Fibrosis Center Ltd, Dead Sea, Israelhttp://www.cfcenter.co.il/ The Cystic Fibrosis Center Ltd, Dead Sea, IsraelTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Camps Seasonal health camp on the Dead Sea. Information on staff, programs, photo gallery and newsletter.
Other resource N28 CF Rules OKhttp://ourworld.compuserve.com/homepages/Pat_and_John_Cuckney/ CF Rules OKTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Personal_Pages Mother of a girl with CF has published a book which describes the story of her daughter's life with Cystic Fibrosis.
Other resource N29 If You Ask James...http://azcowboy88.tripod.com/askjames/ If You Ask James...Top/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Personal_Pages The personal website of a 31 year old man with CF. It provides current information about Cystic Fibrosis and links to other helpful sites.
Other resource N30 Lungs for Shawnhttp://www.geocities.com/atmshawn/ Lungs for ShawnTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Personal_Pages Site about Shawn Hunter a 27 year-old man with CF who is waiting for a double lung transplant. Includes a journal of what is happening with Shawn.
Other resource N31 cystic fibrosishttp://members.aol.com/JAW060664/html/cf.html cystic fibrosisTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Personal_Pages Site for those wanting to learn about end stage. Not for someone whose child has been recently diagnosed. By a woman waiting for a lung transplant.
Other resource N32 Cindy Lynn's Home Pagehttp://crayzray.tripod.com/clpage/cl.htm Cindy Lynn's Home PageTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Personal_Pages Site by girl with CF. Includes her hobbies, favorite music, favorite books and diagnosis story.
Other resource N33 Sprinkle Triplets Home Pagehttp://www.mounet.com/~eaowyn/ Sprinkle Triplets Home PageTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Personal_Pages Site for a set of triplets one has CF.
Other resource N34 Janet Lynn Rippee personal pagehttp://49987868.home.icq.com/Janet.html Janet Lynn Rippee personal pageTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Personal_Pages Page for a little girl with cystic fibrosis.
Other resource N35 Cystic Fibrosishttp://members.tripod.com/~blackwolf54/index.html Cystic FibrosisTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Personal_Pages Personal page by an aunt for her neice with CF.
Other resource N36 Mel Kotlyarhttp://www.my2by2.net/shop4cf/now.html Mel KotlyarTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Personal_Pages Personal page by a man with CF. Includes links to shop at various stores with a percent of the proceeds of sales going to the CFF.
Other resource N37 Crista Lint-Kloppenburghttp://www.lintje.com/cfeng.htm Crista Lint-KloppenburgTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Personal_Pages Site by a Dutch woman with Cystic Fibrosis.
Other resource N38 David's Pageshttp://www.the-thornes.com/davids.htm David's PagesTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Personal_Pages Site by an English man with Cystic Fibrosis.
Other resource N39 CYSTIC FIBROSIS FOR KIDShttp://members.tripod.com/~jtatton/index.html CYSTIC FIBROSIS FOR KIDSTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Personal_Pages This site is for children with cystic fibrosis designed by a man from the Netherlands with CF.
Other resource N40 Sarah Yourmanhttp://www.sarahyourman.com/ Sarah YourmanTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Personal_Pages Site by a girl with CF and Diabetes.
Other resource N41 Page for Someone Special to Us Allhttp://www.angelfire.com/pa3/jenjen24/ Page for Someone Special to Us AllTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Personal_Pages/Memorials Memorial page for woman with CF.
Other resource N42 Cute Petite Chic - A Cystic Fibrosis Webhttp://www.cuteptchic.com Cute Petite Chic - A Cystic Fibrosis WebTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Personal_Pages/Memorials Basic information with good description of sweat test, memorial page for a girl lost to CF at age 9, details of her last days and link to give in her memory through Great Strides.
Other resource N43 Eulogy for Jef Bairdhttp://www.geocities.com/CapeCanaveral/9740/JEFEULGY.HTM Eulogy for Jef BairdTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Personal_Pages/Memorials Eulogy for a young man who lost his life to CF.
Other resource N44 In Loving Memory of Angie Ekwallhttp://www.geocities.com/angelassixtyfiveroses/ In Loving Memory of Angie EkwallTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Personal_Pages/Memorials A memorial site for Angela Ekwall, who lost her life at age 20 to cystic fibrosis.
Other resource N45 Susy Dirr's Web Pagehttp://members.aol.com/pretzel20/ Susy Dirr's Web PageTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Personal_Pages/Post_Transplant Site about a woman with CF who underwent a lung transplant.
Other resource N46 Israel's CF Centerhttp://www.y2lungs.com/TelHashomer.htm Israel's CF CenterTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Medical_Facilities National Center for Cystic Fibrosis at the Chaim Sheba Medical Center, Tel Hashomer, is the largest center in Israel. Contact information and hours included.
Other resource N47 CF Pulmonary Treatment & Research Centerhttp://www.med.unc.edu/wrkunits/3ctrpgm/cystfib/CFcent.htm CF Pulmonary Treatment & Research CenterTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Medical_Facilities The UNC Cystic Fibrosis Pulmonary Research and Treatment Center is a large, multidisciplinary group focused on the pathogenesis and therapy of cystic fibrosis and other lung diseases. One of the largest clinical programs in the country with over 500 patients in our pediatric & adult programs.
Other resource N48 Cystic Fibrosis Clinical and Research Center - Seattlehttp://depts.washington.edu/cfcenter Cystic Fibrosis Clinical and Research Center - SeattleTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Medical_Facilities University of Washington CF Center. Information on Cf Research Development Program, Core Center for Gene Therapy, Clinic, Research Trials, current events and staff.
Other resource N49 UCLA CF Clinichttp://www.healthcare.ucla.edu/handbook/program.asp?version=5619&programid=79 UCLA CF ClinicTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Medical_Facilities Contact information of Cystic Fibrosis clinic at UCLA.
Other resource N50 Michigan Pulmonary Disease Community, Inc.http://www.mpdci.org Michigan Pulmonary Disease Community, Inc.Top/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Support_Groups Organization dedicated to enhancing lives of children and adults with Cystic Fibrosis.
Other resource N51 Cystic Fibrosis Communityhttp://community.healingwell.com/community/?f=18 Cystic Fibrosis CommunityTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Support_Groups Active message board and chat for caregivers and individuals with Cystic Fibrosis. Share support, give advice, offer coping skills. Moderated by volunteers.
Other resource N52 Cystic Fibrosis Mutation Data Basehttp://www.genet.sickkids.on.ca/cftr/ Cystic Fibrosis Mutation Data BaseTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/CFTR_and_Genetic_Mutations Database of Cystic Fibrosis mutations plus other relevant information on these mutations.
Other resource N53 About TOBI and the Management of Cystic Fibrosishttp://www.abouttobi.com About TOBI and the Management of Cystic FibrosisTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Pharmaceuticals_and_Supplies Information on Tobramycin Solution for Inhalation (TOBI) for pseudomonas infection, by pharmaceutical agency.
Other resource N54 Pulmozyme.comhttp://www.pulmozyme.com Pulmozyme.comTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Pharmaceuticals_and_Supplies Cystic fibrosis information, symptoms, and treatments. Pulmozyme (dornase alfa) inhalation solution, from Genentech, Inc.
Other resource N55 Pre-implantation, Pre-natal and Newborn Screening for CFhttp://personal.nbnet.nb.ca/normap/screening.htm Pre-implantation, Pre-natal and Newborn Screening for CFTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Testing Details the tests available for fetuses and newborns for early Cystic Fibrosis diagnosis.
Other resource N56 American Medical Association: Cystic Fibrosis Testinghttp://www.ama-assn.org/ama/pub/category/9181.html American Medical Association: Cystic Fibrosis TestingTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Testing/Genetic Information on genetic testing to identify people who carry the mutation associated with this condition.
Other resource N57 Neonatal Cystic Fibrosis Screeninghttp://health.allrefer.com/health/neonatal-cystic-fibrosis-screening-info.html Neonatal Cystic Fibrosis ScreeningTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Testing/Diagnostic Information sheets on testing for immunoreactive trypsinogen to diagnose CF in infants. Test description, preparation, risks, expectations, special considerations, normal and abnormal values, and evaluation of results.
Other resource N58 Cystic Fibrosis Nurses: the International Specialist Grouphttp://www.cfnurses.net Cystic Fibrosis Nurses: the International Specialist GroupTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Organizations Organization whose goals include setting and promoting high standards of nursing practice in the treatment of persons with Cystic Fibrosis.
Other resource N59 Cystic Fibrosis Worldwidehttp://www.iacfa.org/ Cystic Fibrosis WorldwideTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Organizations International Association of Cystic Fibrosis Adults web site and International Cystic Fibrosis Mucoviscidosis Association.
Other resource N60 National Cystic Fibrosis Awareness Committee (NCFAC)http://www.cfawareness.org/ National Cystic Fibrosis Awareness Committee (NCFAC)Top/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Organizations Helps to advance the public awareness of the genetic disease. Site includes mission statement and message board.
Other resource N61 CCFF Sudbury Chapterhttp://www.cyberbeach.net/~cf CCFF Sudbury ChapterTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Organizations Website of the Canadian Cystic Fibrosis Foundation Sudbury Chapter. Provides information on local events and information about Cystic Fibrosis.
Other resource N62 Lungs for Life Foundationhttp://Lungsforlife.org/ Lungs for Life FoundationTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Organizations Provides financial assistance to cystic fibrosis and lung transplant patients.
Other resource N63 The Victoria Foundationhttp://members.lycos.co.uk/victoriafoundation/ The Victoria FoundationTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Organizations Helps young adults with Cystic Fibrosis and assist parents in caring for their son or daughter at home, with the support of the Southampton CF adult team.
Other resource N64 Elizabeth Nash Foundationhttp://elizabethnashfoundation.org Elizabeth Nash FoundationTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Organizations Supports causes reflective of Elizabeth Nash's interests and values with a specific emphasis on efforts that improve the lives of those affected by Cystic Fibrosis.
Other resource N65 The Genentech Endowment for Cystic Fibrosishttp://www.genentechcfendowment.org The Genentech Endowment for Cystic FibrosisTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Organizations An independent, non-profit endowment dedicated to expanding access to Pulmozyme® (dornase alpha) therapy to qualifying un-insured and under-insured CF patients. Find the eligibility and how to apply.
Other resource N66 BioSpace News: Cystic fibrosishttp://www.biospace.com/news_rxtarget.cfm?RxTargetID=63 BioSpace News: Cystic fibrosisTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/News_and_Media News on new developments with Cystic Fibrosis. Kept in an easy to use format with up-to-date links.
Other resource N67 Sharktank.orghttp://www.sharktank.org Sharktank.orgTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Research Dedicated research for a cure for cystic fibrosis.
Other resource N68 AIR-CFhttp://www.air-cf.com AIR-CFTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Research Information resource for the Aztreonam Lysinate for Inhalation Research in Cystic Fibrosis clinical trials.
Other resource N69 Hemochromatosis Education and Researchhttp://www.uwgi.org/hemochromatosis Hemochromatosis Education and ResearchTop/Health/Conditions_and_Diseases/Genetic_Disorders/Hemochromatosis Provides education, information and resources for health care providers, patients, and relatives of people with hereditary hemochromatosis.
Other resource N70 Iron Overload, Public Health and Geneticshttp://www.acponline.org/journals/annals/01dec98/supptoc.htm Iron Overload, Public Health and GeneticsTop/Health/Conditions_and_Diseases/Genetic_Disorders/Hemochromatosis A supplement to the Annals of Internal Medicine with articles about hemochromatosis.
Other resource N71 Canadian Hemochromatosis Societyhttp://www.cdnhemochromatosis.ca/ Canadian Hemochromatosis SocietyTop/Health/Conditions_and_Diseases/Genetic_Disorders/Hemochromatosis Information about the symptoms, diagnosis and treatment of hemochromatosis.
Other resource N72 Omim: Hemochromatosishttp://www.ncbi.nlm.nih.gov/htbin-post/Omim/dispmim?235200 Omim: HemochromatosisTop/Health/Conditions_and_Diseases/Genetic_Disorders/Hemochromatosis Detailed up-to-date scientific information on hemochromatosis.
Other resource N73 Haemochromatosis Society UKhttp://www.ghsoc.org/ Haemochromatosis Society UKTop/Health/Conditions_and_Diseases/Genetic_Disorders/Hemochromatosis Voluntary organisation for patients in England, Wales, Scotland and Northern Ireland.
Other resource N74 Hemochromatosis Information Societyhttp://www.hemoinfo.org Hemochromatosis Information SocietyTop/Health/Conditions_and_Diseases/Genetic_Disorders/Hemochromatosis Offers information about the symptoms and treatment of hereditary hemochromatosis.
Other resource N75 IPH-Nethttp://iphnet.tripod.com IPH-NetTop/Health/Conditions_and_Diseases/Genetic_Disorders/Hemochromatosis Resources and information about Idiopathic Pulmonary Hemosiderosis, a very rare lung disorder affecting children and adults.
Other resource N76 National Library of Medicine: Joubert syndromehttp://www.nlm.nih.gov/mesh/jablonski/syndromes/syndrome375.html National Library of Medicine: Joubert syndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Joubert_Syndrome Synonyms, a summary and a list of major features for this disorder.
Other resource N77 The Genetics of Joubert Syndrome and Related Disordershttp://www.ccm.ucsd.edu/jsrd.htm The Genetics of Joubert Syndrome and Related DisordersTop/Health/Conditions_and_Diseases/Genetic_Disorders/Joubert_Syndrome Information is presented for both physicians and families with affected children, including disease description, treatment options, prognosis, and current research.
Other resource N78 MedicineNethttp://www.medicinenet.com/Script/Main/Art.asp?li=MNI&ArticleKey=3382 MedicineNetTop/Health/Conditions_and_Diseases/Genetic_Disorders/Familial_Hypercholesterolemia A brief article about familial hypercholesterolemia.
Other resource N79 NORD: Crigler Najjar Syndrome Type Ihttp://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Crigler%20Najjar%20Syndrome%20Type%20I NORD: Crigler Najjar Syndrome Type ITop/Health/Conditions_and_Diseases/Genetic_Disorders/Crigler-Najjar_Syndrome General information and further resources.
Other resource N80 NINDS: Coffin Lowry Syndromehttp://www.ninds.nih.gov/health_and_medical/disorders/coffin_lowry.htm NINDS: Coffin Lowry SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Coffin_Lowry_Syndrome Information sheet compiled by the National Institute of Neurological Disorders and Stroke.

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