Sturge-Weber Syndrome Center

site URL - http://www.neuro.jhmi.edu/HopkinsSWSCenter/index.htm

Site description: Clinical center dedicated to the treatment and study of SWS at Johns Hopkins Hospital in Baltimore. Find disease information, diagnosing, and treatment as well as details about the facility.




Topic: Top/Health/Conditions_and_Diseases/Genetic_Disorders/Sturge-Weber_Syndrome
LINKURI & TITLEDESCRIPTION & TOPIC
Previous 10National Library of Medicine: OShttp://www.nlm.nih.gov/mesh/jablonski/syndromes/syndrome498.html National Library of Medicine: OSTop/Health/Conditions_and_Diseases/Genetic_Disorders/Opitz_Syndrome Opitz syndrome, the synonyms, a summary and a list of major features.
PreviousNORD: Sturge Weber Syndromehttp://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Sturge%20Weber%20Syndrome NORD: Sturge Weber SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Sturge-Weber_Syndrome Offers a list of synonyms, a general discussion and further resources.
Random 1Menlo Medical Clinichttp://www.execmd.com/ Menlo Medical ClinicTop/Regional/North_America/United_States/California/Localities/M/Menlo_Park/Health Offers an Executive Health Program and is affiliated with Stanford University Medical Center.
Random 2Sabibahttp://www.futurevisions.net/sabiba/ SabibaTop/Arts/Performing_Arts/Dance/Middle_Eastern/Teachers_and_Performers/United_States/California Featuring Sabiba from San Jose, California. Has some streaming video clips of Sabiba dancing.
Random 3Centre for Molecular Medicine and Therapeuticshttp://www.cmmt.ubc.ca/ Centre for Molecular Medicine and TherapeuticsTop/Science/Biology/Biochemistry_and_Molecular_Biology/Institutions/Research_Groups The CMMT is a site for research on the determination and control of genetic susceptibility to disease. Lists core facilities, laboratories, staff and news from Vancouver, British Columbia.
Random 4St. John's Health Systemhttp://www.stjohns.com/ St. John's Health SystemTop/Regional/North_America/United_States/Missouri/Localities/R/Republic/Health St. John's, a Christian-based hospital located in Springfield, Missouri, also serves the health needs of Republic residents. Use their web site to find a doctor, read current hospital news, obtain contact information, or find a career. Also offers a "web nursurey" for viewing newborns online.
Random 5Houston Swing Dance Societyhttp://www.hsds.org Houston Swing Dance SocietyTop/Arts/Performing_Arts/Dance/Swing/Regional A non-profit, educational organization, dedicated to the preservation and enjoyment of swing dancing.
NextNORD: Prune Belly Syndromehttp://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Prune%20Belly%20Syndrome NORD: Prune Belly SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Prune_Belly_Syndrome Offers a list of synonyms, a general discussion and further resources.
Next 10Schizencephaly.comhttp://www.schizencephaly.com Schizencephaly.comTop/Health/Conditions_and_Diseases/Genetic_Disorders/Schizencephaly Dedicated to the family, friends, and caregivers of individuals with Schizencephaly. FAQs, forum, and resources.
Random 1Van Eaton Gallerieshttp://vegalleries.com/ Van Eaton GalleriesTop/Arts/Animation/Collectibles/Animation_Art/Dealers Full service animation art gallery and resource center featuring production artwork, limited editions, sculpture, videos, books, reference, and cels & sericels form all major studios.
Random 4Indian Institute of Health Management Researchhttp://www.iihmr.org/ Indian Institute of Health Management ResearchTop/Regional/Asia/India/Rajasthan/Localities/Jaipur/Health Principal activities are research and consultancy, education and training, and institutional networking. Major current projects and activities are described.
Random 4Klinik for Klassisk Homøopati og Naturhelbredelsehttp://www.homeopati-fyn.dk/ Klinik for Klassisk Homøopati og NaturhelbredelseTop/World/Dansk/Sundhed/Alternativ/Homøopati/Behandlere Ved klassisk homøopat Merete Klinkvort. Generel information, behandling, priser, medicin og patienthistorier.
Next 70Propionic Acidemia Foundationhttp://pafoundation.com Propionic Acidemia FoundationTop/Health/Conditions_and_Diseases/Genetic_Disorders/Propionic_Acidemia The PAF is an organization that funds academic and medical research leading to better treatments and a cure of propionic acidemia, an inborn error of metabolism.
Previous 70Vanderbilt Medical Centerhttp://www.mc.vanderbilt.edu/peds/pidl/nutrit/incont.htm Vanderbilt Medical CenterTop/Health/Conditions_and_Diseases/Genetic_Disorders/Incontinentia_Pigmenti An article about incotinentia pigmenti.
Next 170V I P Newshttp://www.vipnews.org.uk V I P NewsTop/Health/Conditions_and_Diseases/Eye_Disorders/Blindness A voluntary site for daily updated links to related news stories from around the world.
Previous 170Klinefelter Syndromehttp://www.emedicine.com/PED/topic1252.htm Klinefelter SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Klinefelter_Syndrome Overview and medical information.
Next 270
Previous 270HOPGENEhttp://www.hopkins-genomics.org/cf/cf_research.html HOPGENETop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Medical_Facilities Cystic Fibrosis Genomic Research at Johns Hopkins University.
Other resource N0 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 N1 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 N2 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 N3 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 N4 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 N5 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 N6 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 N7 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 N8 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 N9 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 N10 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 N11 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 N12 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 N13 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 N14 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 N15 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 N16 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 N17 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 N18 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 N19 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 N20 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 N21 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 N22 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 N23 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 N24 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 N25 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 N26 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 N27 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 N28 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 N29 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.
Other resource N30 Klinefelter Syndrome Supporthttp://klinefeltersyndrome.org Klinefelter Syndrome SupportTop/Health/Conditions_and_Diseases/Genetic_Disorders/Klinefelter_Syndrome Educational and support information about Klinefelter Syndrome/XXY and its variants.
Other resource N31 Klinefelter's Syndrome gynecomastiahttp://www.plasticsurgery4u.com/procedure_folder/male_breast4.html Klinefelter's Syndrome gynecomastiaTop/Health/Conditions_and_Diseases/Genetic_Disorders/Klinefelter_Syndrome Male chest recontouring for large male breasts (gynecomastia) found in Klinefelter's Syndrome with surgical reduction by excision and liposuction. Before and after photographs, links, movies, and patient question and answer boards.
Other resource N32 American Association for Klinefelter Syndrome Information and Support (AAKSIS)http://www.AAKSIS.org/ American Association for Klinefelter Syndrome Information and Support (AAKSIS)Top/Health/Conditions_and_Diseases/Genetic_Disorders/Klinefelter_Syndrome Email list, conference, membership, newsletter, regional groups and resource links.
Other resource N33 My Klinefelter's Syndrome Pagehttp://www.geocities.com/WestHollywood/Castro/4998/klinefel.html My Klinefelter's Syndrome PageTop/Health/Conditions_and_Diseases/Genetic_Disorders/Klinefelter_Syndrome David Brager's story, with information about Klinefelter's.
Other resource N34 Klinefelter Syndrome - The Ohio Support Networkhttp://www.klinefelter-ohio.com Klinefelter Syndrome - The Ohio Support NetworkTop/Health/Conditions_and_Diseases/Genetic_Disorders/Klinefelter_Syndrome Specific health and educational resources for Ohio KS individuals and their families. Links to local and national healthcare, ongoing research, conferences, and support meetings.
Other resource N35 The CaF Directoryhttp://www.cafamily.org.uk/Direct/b12.html The CaF DirectoryTop/Health/Conditions_and_Diseases/Genetic_Disorders/Beckwith-Wiedemann_Syndrome A description of beckwith-wiedemann syndrome, features, and possible complications. Also information about a support group.
Other resource N36 Adam.com: An Overviewhttp://www.nlm.nih.gov/medlineplus/ency/article/001186.htm Adam.com: An OverviewTop/Health/Conditions_and_Diseases/Genetic_Disorders/Beckwith-Wiedemann_Syndrome A definition of beckwith-wiedemann syndrome, along with a look at the alternate names, causes, incidence and risk factors.
Other resource N37 Beckwith-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.
Other resource N38 National Library of Medicine: FHShttp://www.nlm.nih.gov/mesh/jablonski/syndromes/syndrome300.html National Library of Medicine: FHSTop/Health/Conditions_and_Diseases/Genetic_Disorders/Floating-Harbor_Syndrome Floating-harbor syndrome, the synonyms, a summary and a list of major features.
Other resource N39 Von Hippel-Lindau Family Alliancehttp://www.vhl.org/ Von Hippel-Lindau Family AllianceTop/Health/Conditions_and_Diseases/Genetic_Disorders/Von_Hippel-Lindau Information about the organization and the disease. Includes FAQs, newsletter, handbook, meeting schedules and support group data.
Other resource N40 Von 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.
Other resource N41 Medstudentshttp://www.medstudents.com.br/raredi/raredi3.htm MedstudentsTop/Health/Conditions_and_Diseases/Genetic_Disorders/Nail_Patella_Syndrome A review about nail-patella syndrome, including the genetics, incidence, pathophysiology, signs and symptoms, and prognosis.
Other resource N42 U-M Kellogg Eye Centerhttp://www.kellogg.umich.edu/patientcare/conditions/nail-patella.html U-M Kellogg Eye CenterTop/Health/Conditions_and_Diseases/Genetic_Disorders/Nail_Patella_Syndrome Nail-patella syndrome: definition and treatment information, including surgery. A discussion about the strong evidence of a link between glaucoma and NPS.
Other resource N43 Alpha 1 Awareness Alliancehttp://www.kama.u-net.com Alpha 1 Awareness AllianceTop/Health/Conditions_and_Diseases/Genetic_Disorders/Alpha-1_Antitrypsin_Deficiency A site where members of the medical professions and the public can find information about alpha 1-antitrypsin- deficiency. Includes news, reports and links.
Other resource N44 Patient UKhttp://www.patient.co.uk/showdoc.asp?doc=90 Patient UKTop/Health/Conditions_and_Diseases/Genetic_Disorders/Alpha-1_Antitrypsin_Deficiency A list of resources and support for persons living in the UK who are interested in Alpha-1 Antitrypsin Deficiency.
Other resource N45 Alpha-1 Communityhttp://windless.f2o.org Alpha-1 CommunityTop/Health/Conditions_and_Diseases/Genetic_Disorders/Alpha-1_Antitrypsin_Deficiency Memebers can submit news, events, photos or any information relating to Alpha-1 Antitrypsin Deficiency.
Other resource N46 The Natey Foundationhttp://www.nateyfoundation.org/ The Natey FoundationTop/Health/Conditions_and_Diseases/Genetic_Disorders/Batten Information for parents and families of Battens victims.
Other resource N47 Nathan's Battlehttp://www.nathansbattle.com Nathan's BattleTop/Health/Conditions_and_Diseases/Genetic_Disorders/Batten Details a boy's fight against Batten's Disease and dedication to promote awareness to help find a cure.
Other resource N48 The Luke and Rachel Batten Foundationhttp://lrbf.org The Luke and Rachel Batten FoundationTop/Health/Conditions_and_Diseases/Genetic_Disorders/Batten Created to engage in education and medical research toward diagnosis, treatment and/or cure of Juvenile neuronal ceroid lipofuscinosis (Batten disease) and to assist persons with the disease.
Other resource N49 MedicineNet.com - Medical Dictionaryhttp://www.medicinenet.com/Script/Main/Art.asp?li=MNI&ArticleKey=3721 MedicineNet.com - Medical DictionaryTop/Health/Conditions_and_Diseases/Genetic_Disorders/Hereditary_Angioedema A brief article about hereditary angioedema.
Other resource N50 C-1 Esterase Deficiencyhttp://www.emedicine.com/med/topic420.htm C-1 Esterase DeficiencyTop/Health/Conditions_and_Diseases/Genetic_Disorders/Hereditary_Angioedema Article from eMedicine.com by Michael Elnicki MD on C-1 Esterase Deficiency also known as Hereditary angioedema (HAE).
Other resource N51 Treacher Collins Syndrome - A Personal Viewhttp://www.treachercollins.co.uk Treacher Collins Syndrome - A Personal ViewTop/Health/Conditions_and_Diseases/Genetic_Disorders/Personal_Pages UK based website, containing information about the disorder, with helpful links and discussion forum.
Other resource N52 Robert Kenneth Picklesimerhttp://www.picklesimers.com/robert_kenneth.html Robert Kenneth PicklesimerTop/Health/Conditions_and_Diseases/Genetic_Disorders/Personal_Pages Born with Jeune Syndrome or Asphyxiating Thoracic Dystrophy in Louisville Kentucky. He underwent corrective surgery in San Antonio Texas, called the Titanium Rib Project.
Other resource N53 Story of Robert Purkishttp://swpurkis.pwp.blueyonder.co.uk/index.html Story of Robert PurkisTop/Health/Conditions_and_Diseases/Genetic_Disorders/Personal_Pages A small boy's health problems, possibly Leigh's Syndrome, and how his parents have helped him improve his quality of life.
Other resource N54 Unlucky Mutanthttp://unluckymutant.no.sapo.pt Unlucky MutantTop/Health/Conditions_and_Diseases/Genetic_Disorders/Personal_Pages The author request help from geneticists, neuroscientists, pharmaceuticals or biotech companies.
Other resource N55 Moebius Syndrome Foundationhttp://www.ciaccess.com/moebius/ Moebius Syndrome FoundationTop/Health/Conditions_and_Diseases/Genetic_Disorders/Mobius_Syndrome Bringing together information from and links to medical and lay support for those affected by Moebius syndrome.
Other resource N56 About.com with Laura L. Jelliffe, Ph.D.http://genetics.about.com/science/genetics/library/blmob.htm About.com with Laura L. Jelliffe, Ph.D.Top/Health/Conditions_and_Diseases/Genetic_Disorders/Mobius_Syndrome Symptoms, diagnosis, and treatment of mobius syndrome. Information on research, community outreach and support.
Other resource N57 National Library of Medicine: LShttp://www.nlm.nih.gov/mesh/jablonski/syndromes/syndrome401.html National Library of Medicine: LSTop/Health/Conditions_and_Diseases/Genetic_Disorders/Lowe_Syndrome Lowe syndrome, the synonyms, a summary and list of major features.
Other resource N58 THCME 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.
Other resource N59 Adam's LCHAD Pagehttp://www.adamslchad.com Adam's LCHAD PageTop/Health/Conditions_and_Diseases/Genetic_Disorders/Fatty_Oxidation Online journal detailing the life of a boy with LCHAD which is a Fatty Acid Oxidation Disorder. Includes general information details about research studies.
Other resource N60 Hemihypertrophyhttp://www.geocities.com/HotSprings/Spa/6112 HemihypertrophyTop/Health/Conditions_and_Diseases/Genetic_Disorders/Hemihypertrophy For patient and family, support and information regarding this disease. Related links and mailing list.
Other resource N61 NORD: Meckel Syndromehttp://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Meckel%20Syndrome NORD: Meckel SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Meckel-Gruber_Syndrome A general discussion and alternate names along with further resources.
Other resource N62 Dr. Greene's HouseCallshttp://www.drgreene.com/body.cfm?id=21&action=detail&ref=599 Dr. Greene's HouseCallsTop/Health/Conditions_and_Diseases/Genetic_Disorders/DiGeorge_Syndrome The doctor answers a question from a mother about strengthening her daughter immune system. Her daughter has DiGeorges syndrome.
Other resource N63 National Library of Medicinehttp://www.nlm.nih.gov/mesh/jablonski/syndromes/syndrome067.html National Library of MedicineTop/Health/Conditions_and_Diseases/Genetic_Disorders/Incontinentia_Pigmenti Bloch-sulzberger syndrome, the synonyms, a summary and major features.
Other resource N64 Vanderbilt Medical Centerhttp://www.mc.vanderbilt.edu/peds/pidl/nutrit/incont.htm Vanderbilt Medical CenterTop/Health/Conditions_and_Diseases/Genetic_Disorders/Incontinentia_Pigmenti An article about incotinentia pigmenti.
Other resource N65 Incontinentia Pigmenti: All About Annahttp://mom_2_three_ip.tripod.com/ Incontinentia Pigmenti: All About AnnaTop/Health/Conditions_and_Diseases/Genetic_Disorders/Incontinentia_Pigmenti The authors' daughter was diagnosed with IP 6 weeks after birth. This is her story.
Other resource N66 National Library of Medicine: Laurence-Moon Syndromehttp://www.nlm.nih.gov/cgi/jablonski/syndrome_cgi?term=Laurence-Moon+syndrome&field=name National Library of Medicine: Laurence-Moon SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Laurence-Moon_Syndrome A look at its former names, a summary and a list of clinical features.
Other resource N67 National Urea Cycle Disorders Foundationhttp://www.nucdf.org/ National Urea Cycle Disorders FoundationTop/Health/Conditions_and_Diseases/Genetic_Disorders/Urea_Cycle Information about the organization as well as the disease. Family support, membership, newborn screening project and medical information.
Other resource N68 The FSP Support Grouphttp://www.fspgroup.org The FSP Support GroupTop/Health/Conditions_and_Diseases/Genetic_Disorders/Hereditary_Spastic_Paraplegia For people suffering from Familial Spastic Paraplegia. Includes a newsletter, discussion forum, links, and contact details.
Other resource N69 Spastic Paraplegia Foundationhttp://sp-foundation.org/ Spastic Paraplegia FoundationTop/Health/Conditions_and_Diseases/Genetic_Disorders/Hereditary_Spastic_Paraplegia Supports on the upper motor neuron disorders hereditary spastic paraplegia and primary lateral sclerosis. Information about these conditions, disability resources, newsletters, news, announcements, research and support.
Other resource N70 MCW Healthlinkhttp://healthlink.mcw.edu/article/921961934.html MCW HealthlinkTop/Health/Conditions_and_Diseases/Genetic_Disorders/Soto's_Syndrome An article about soto's syndrome with an explanation of what it is, the features, symptoms and the prognosis.
Other resource N71 International Society for Mannosidosis & Related Diseaseshttp://www.mannosidosis.org International Society for Mannosidosis & Related DiseasesTop/Health/Conditions_and_Diseases/Genetic_Disorders/Mannosidosis Information about the organization, its mission and services. Provides support, education and research on Alpha Mannosidosis and other similar disorders.
Other resource N72 Justin Comeauhttp://personal.nbnet.nb.ca/justin03/ Justin ComeauTop/Health/Conditions_and_Diseases/Genetic_Disorders/Zellweger_Syndrome A personal page about a little boy who has Zellweger syndrome. Offers family pictures, information about the disease and the personal story of Justin.
Other resource N73 National Library of Medicinehttp://www.nlm.nih.gov/cgi/jablonski/syndrome_cgi?term=Weaver+syndrome&field=name National Library of MedicineTop/Health/Conditions_and_Diseases/Genetic_Disorders/Weaver_Syndrome Synonyms of Weaver syndrome, a summary and a list of major features.
Other resource N74 National Library of Medicinehttp://www.nlm.nih.gov/cgi/jablonski/syndrome_cgi?term=Waardenburg+anophthalmia+syndrome&field=name National Library of MedicineTop/Health/Conditions_and_Diseases/Genetic_Disorders/Waardenburg_Syndrome Offers synonyms, a summary and a list of major features.
Other resource N75 The Andy Fundhttp://www.andy.org.mx The Andy FundTop/Health/Conditions_and_Diseases/Genetic_Disorders/Ectodermal_Dysplasia Describes the health condition of a boy who was born with ectodermal dysplasia with immune deficiency caused by a mutation on the fourth part of the NEMO gene.
Other resource N76 Ectodermal Dysplasia Societyhttp://www.ectodermaldysplasia.org/ Ectodermal Dysplasia SocietyTop/Health/Conditions_and_Diseases/Genetic_Disorders/Ectodermal_Dysplasia Information about the organization as well as the ED condition. Includes links, news articles and contact details.
Other resource N77 NORD: Pseudoxanthoma Elasticumhttp://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Pseudoxanthoma%20Elasticum%20%28PXE%29 NORD: Pseudoxanthoma ElasticumTop/Health/Conditions_and_Diseases/Genetic_Disorders/Pseudoxanthoma_Elasticum Offers a general discussion and resources for PXE.
Other resource N78 MJD Fact Sheethttp://glawen.freeyellow.com/joseph3.htm MJD Fact SheetTop/Health/Conditions_and_Diseases/Genetic_Disorders/Machado-Joseph In depth look at machado-joseph disease with some resources for further reading.
Other resource N79 NINDS: Lesch-Nyhan Syndromehttp://www.ninds.nih.gov/health_and_medical/disorders/lesch_doc.htm NINDS: Lesch-Nyhan SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Lesch-Nyhan_Syndrome Information sheet compiled by the National Institute of Neurological Disorders and Stroke.
Other resource N80 National Library of Medicinehttp://www.nlm.nih.gov/mesh/jablonski/syndromes/syndrome272.html National Library of MedicineTop/Health/Conditions_and_Diseases/Genetic_Disorders/Dubowitz_Syndrome Dubowitz syndrome, a look at the synonyms, a summary and list of major features.

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