Smart Groups: Alström Families

site URL - http://smartgroups.com/groups/alstromfamilies

Site description: Mailing list, pictures, links and files.




Topic: Top/Health/Conditions_and_Diseases/Rare_Disorders/Alström_Syndrome

LINKURI & TITLEDESCRIPTION & TOPIC
Previous 10Virtual Children's Hospital: Enchondromatosishttp://www.vh.org/Providers/TeachingFiles/PAP/MSDiseases/Enchondromatosis.html Virtual Children's Hospital: EnchondromatosisTop/Health/Conditions_and_Diseases/Rare_Disorders/Ollier_Disease Clinical presentation, etiology and imaging findings.
PreviousAlström Syndromehttp://www.jax.org/alstrom Alström SyndromeTop/Health/Conditions_and_Diseases/Rare_Disorders/Alström_Syndrome Clinical features, literature and research. Includes guidelines for health care professionals.
Random 1MedPro Staffinghttp://www.medprostaffing.com MedPro StaffingTop/Business/Healthcare/Employment/Recruitment_and_Staffing Staffing for medical clerical personnel, nurses, and imaging specialists, hospital financial managers and physician's assistants.
Random 2Shizuka New Yorkhttp://www.shizuka-newyork.com/products/eng/index.asp Shizuka New YorkTop/Shopping/Health/Beauty/Skin_Care/Anti-Aging Provides full line of natural botanical products for every day use to improve aging skin.
Random 3Drum Dance Bellydancehttp://members.dodo.net.au/%7edrumdance/ Drum Dance BellydanceTop/Arts/Performing_Arts/Dance/Middle_Eastern/Teachers_and_Performers/Australia Dance and music performance group from Queensland. Biography, class times and contact information.
Random 4Down's Syndrome Association, Lincolnshire Branchhttp://www.emandan.freeserve.co.uk Down's Syndrome Association, Lincolnshire BranchTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Organizations Poems and stories, articles, and book reviews.
Random 5American Academy of Family Physicians - Patient Informationhttp://www.aafp.org/afp/980315ap/hueston.html American Academy of Family Physicians - Patient InformationTop/Health/Conditions_and_Diseases/Respiratory_Disorders/Bronchitis A patient information article on acute bronchitis by William J. Hueston, M.D.
NextNORD - Alström Syndromehttp://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Alstrom%20Syndrome NORD - Alström SyndromeTop/Health/Conditions_and_Diseases/Rare_Disorders/Alström_Syndrome Sample report, plus links to organisations. [Fee required for full report]
Next 10Living with Allergies: NIAID Fact Sheethttp://www.niaid.nih.gov/factsheets/allergyr.htm Living with Allergies: NIAID Fact SheetTop/Health/Conditions_and_Diseases/Allergies Resources for patients with this disorder.
Random 1Together In Parishttp://www.angelfire.com/pa/anya782/index2.html Together In ParisTop/Arts/Animation/Movies/Titles/Anastasia_Series/Anastasia An image gallery, lyrics, quotes, quiz, and polls, as well as an award and the voice cast.
Random 4QwikMedSiteshttp://www.qwikmedsites.com/ QwikMedSitesTop/Computers/Internet/Web_Design_and_Development/Designers/Health_and_Medical Automated web site design generator for the medical equipment industry.
Random 4SureTonehttp://www.suretone.co.za SureToneTop/Shopping/Health/Physical_Therapy/Electrotherapy Features an electronic muscle stimulation which are used for passive muscle exercise and effective for slimming, cellulite reduction and the toning and strengthening of muscles.
Next 70Yahoo! Health - Allergy Health Centerhttp://health.yahoo.com/health/centers/allergy/ Yahoo! Health - Allergy Health CenterTop/Health/Conditions_and_Diseases/Allergies Find information on allergies and their causes, diagnosis, symptoms, different types of treatments, and air quality and pollen maps.
Previous 70Living with Wegener's Granulomatosishttp://arniemarge.tripod.com/arnieepistle.html Living with Wegener's GranulomatosisTop/Health/Conditions_and_Diseases/Rare_Disorders/Wegener's_Granulomatosis The author tells of her ordeal because there are millions of people who could contract this disease, and in the hopes that this article helps them or their physician to diagnose earlier.
Next 170Food Anaphylactic Children Training and Support Associationhttp://www.allergyfacts.org.au/ Food Anaphylactic Children Training and Support AssociationTop/Health/Conditions_and_Diseases/Allergies/Food Australian non profit organization that provides information, training and emotional support. Includes information about allergies, food alerts, labelling, support for parents, and advice on handling the stress.
Previous 170Wesley Medical Center's - Sleep Disorders Centerhttp://www.wesleymc.com/CustomPage.asp?guidCustomContentID={18DC58DD-40A2-11D4-A2E1-00508B62BE1F} Wesley Medical Center's - Sleep Disorders CenterTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Basic information from this Wichita based sleep disorders center.
Next 270
Previous 270Living with Narcolepsyhttp://groups.msn.com/LivingwithNarcolepsy/ Living with NarcolepsyTop/Health/Conditions_and_Diseases/Sleep_Disorders/Narcolepsy A place for people to help each other with chat, message board & group news available.
Other resource N0 SONOLAB Sleep Research Laboratoryhttp://www.sonolab.com.br/index_eng.htm SONOLAB Sleep Research LaboratoryTop/Health/Conditions_and_Diseases/Sleep_Disorders/Research Contributing to the diagnosis and optimization of treatment for sleep disturbances.
Other resource N1 An International Journal of Sleep, Dream, and Hypnosishttp://www.sleepandhypnosis.org An International Journal of Sleep, Dream, and HypnosisTop/Health/Conditions_and_Diseases/Sleep_Disorders/Research A multidisciplinary journal, published quarterly. An international forum for opinion within the field of sleep, dream, and hypnosis research interests.
Other resource N2 Association of Polysomnographic Technicians.http://www.aptweb.org Association of Polysomnographic Technicians.Top/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations Site for technical employees of sleep disorder centers for the evaluation and treatment of sleep disorders.
Other resource N3 European Sleep Research Societyhttp://www.esrs.org European Sleep Research SocietyTop/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations Founded in 1972 the European Sleep Research Society promotes all aspects of sleep research.
Other resource N4 The Atlanta School of Sleep Medicinehttp://www.sleepschool.com The Atlanta School of Sleep MedicineTop/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations The Atlanta School of Sleep Medicine is affiliated with the Northside Hospital Sleep Disorders Center and provides courses on sleep medicine, polysomnography and review courses for board certification.
Other resource N5 Better Sleep Councilhttp://www.bettersleep.org/ Better Sleep CouncilTop/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations Useful site. The Council was established in 1978, the Better Sleep Council (BSC) is a nonprofit organization supported by the mattress industry that is devoted to educating the public about the importance of sleep and the value of the sleep system and sleep environment.
Other resource N6 National Heart, Lung, and Blood Institute (NHLBI) Home Pagehttp://www.nhlbi.nih.gov/nhlbi/nhlbi.htm National Heart, Lung, and Blood Institute (NHLBI) Home PageTop/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations NHLBI is a part of the Federal Government's National Institutes of Health. Medical alerts, professional and general health related information, and research and training information for biomedical investigators and students.
Other resource N7 Sleep Research Onlinehttp://www.sro.org Sleep Research OnlineTop/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations WEB Journal (peer-reviewed) providing cutting-edge research results.
Other resource N8 Irish Sleep Apnoea Trusthttp://www.isat.ie/ Irish Sleep Apnoea TrustTop/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations Offers details of the organization, news, services and links.
Other resource N9 American Sleep Associationhttp://www.americansleepassociation.org American Sleep AssociationTop/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations Professional sleep organization focusing on sleep apnea, snoring, insomnia, and narcolepsy. Aims to improve sleep health around the world by educating health care providers and increasing public awareness about sleep health and sleeping disorders.
Other resource N10 The Kentucky Sleep Societyhttp://www.kyss.org/ The Kentucky Sleep SocietyTop/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations Kentucky professional society dedicated to the education of sleep and related disorders.
Other resource N11 American Board of Sleep Medicinehttp://www.absm.org/ American Board of Sleep MedicineTop/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations Features the organization that creates the standards and tests for Board Certification in Sleep Medicine. The site offers patients a listing of Board Certified Sleep Physicians by state or alphabetically by name.
Other resource N12 Sleep paralysishttp://dem0nmac.mgh.harvard.edu/neurowebforum/GeneralFeedbackArticles/sleepparalysis.html Sleep paralysisTop/Health/Conditions_and_Diseases/Sleep_Disorders/Sleep_Paralysis A thread dealing with sleep paralysis (1995-1997).
Other resource N13 Restless Legs Syndrome and Leg Cramps in Fibromyalgia Syndromehttp://www.bmj.com/cgi/content/full/312/7042/1339 Restless Legs Syndrome and Leg Cramps in Fibromyalgia SyndromeTop/Health/Conditions_and_Diseases/Sleep_Disorders/Restless_Legs_Syndrome British Medical Journal article, 1996: a controlled study.
Other resource N14 Earthgirl's Restless Legs Syndromehttp://earthgirl.homestead.com/index.html Earthgirl's Restless Legs SyndromeTop/Health/Conditions_and_Diseases/Sleep_Disorders/Restless_Legs_Syndrome Provides information, links to other RLS pages, and a survey to describe your symptoms/medications.
Other resource N15 Restless Legs Syndrome Fact Sheethttp://www.ninds.nih.gov/health_and_medical/pubs/restless_legs.htm Restless Legs Syndrome Fact SheetTop/Health/Conditions_and_Diseases/Sleep_Disorders/Restless_Legs_Syndrome A publication prepared by the National Institute of Neurological Disorders and Stroke.
Other resource N16 Restless Leg Syndrome Message Boardhttp://www.healthboards.com/cgi/forumdisplay.cgi?action=topics&number=105 Restless Leg Syndrome Message BoardTop/Health/Conditions_and_Diseases/Sleep_Disorders/Restless_Legs_Syndrome Forum for support, and discussion of information, concerns, and treatment options.
Other resource N17 Restless Legs Syndrome Defies Description, Resists Curehttp://healthlink.mcw.edu/article/1031002412.html Restless Legs Syndrome Defies Description, Resists CureTop/Health/Conditions_and_Diseases/Sleep_Disorders/Restless_Legs_Syndrome Information about this syndrome which causes frustration and fatigue caused by the need to move one's legs almost constantly. From HealthLink MCW.
Other resource N18 Mid South Sleep Disorders Clinichttp://www.midsouthsleep.com/ Mid South Sleep Disorders ClinicTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Tennessee and Louisiana based clinics.
Other resource N19 National Sleep Technologieshttp://www.natsleep.com National Sleep TechnologiesTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers National Sleep Technologies has sleep disorders centers throughout the U.S.
Other resource N20 Silicon Valley's Sleep Disorders Centerhttp://www.sleepscape.com/ Silicon Valley's Sleep Disorders CenterTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers The Sleep Disorders Center in Silicon Valley with facilities in San Jose/Los Gatos & Palo Alto. Effective treatment for snoring, apnea, chronic fatigue caused by poor sleep.
Other resource N21 Temple University Sleep Disorders Centerhttp://www.temple.edu/neuro/sleep.html Temple University Sleep Disorders CenterTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Neurology Department
Other resource N22 Center for Sleep & Chronobiologyhttp://www.utoronto.ca/csc/ Center for Sleep & ChronobiologyTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Composed of sleep disorder laboratories and clinics in eight university-affiliated hospitals. The Center provides diagnostic and treatment services as well as conducting research into sleep, wakefulness and biological rhythms.
Other resource N23 Registered Sleepershttp://www.registeredsleepers.com/ Registered SleepersTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers A service that helps facilities set up, equip and support sleep disordered patients.
Other resource N24 The London Laser Clinichttp://www.llc.co.uk/ The London Laser ClinicTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Corrective surgery for snoring and sleep apnoea.
Other resource N25 Jefferson Health System -- Sleep Disordershttp://www.jeffersonhealth.org/diseases/sleep/index.htm Jefferson Health System -- Sleep DisordersTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Sleep Center for the Philadelphia Region with generally precise and concise information on sleep disorders.
Other resource N26 Newcastle Sleep Disorders Centre (Australia)http://www.newcastle.edu.au/department/md/sleep/ Newcastle Sleep Disorders Centre (Australia)Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Sleep studies - routine/diagnostic, MSLT (Multiple Sleep Latency Test), and CPAP (Continuous Positive Airway Pressure) trial for apnoea.
Other resource N27 Sleep Disorders: a Global Resourcehttp://www.thesleepsite.com/world1.html Sleep Disorders: a Global ResourceTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers The Columbus Community Hospital Regional Sleep Disorders Center serves as a source of help for patients from distant points throughout the U.S. and the world.
Other resource N28 Pacific Sleep Medicinehttp://www.sleepmedservices.com Pacific Sleep MedicineTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Pacific Sleep Medicine provides a panel of board-certified sleep specialists offering consultations, diagnosis, and ongoing medical treatment for any sleep disorder.
Other resource N29 Sleep Telemedicine Serviceshttp://www.sleeptelemedicine.com Sleep Telemedicine ServicesTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Details about the center which provides evaluations, consultations, testing and treatment of sleep disorders. Located in Las Vegas, Nevada.
Other resource N30 Summit Sleep Disorder Centerhttp://www.summitsleep.com Summit Sleep Disorder CenterTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Winston-Salem Summit Sleep Disorder Center, North Carolina opened about 15 years ago.
Other resource N31 Sleep HealthCentershttp://www.sleephealth.com/ Sleep HealthCentersTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Specialized facilities in Massachusetts that provide accurate diagnosis of and effective treatment for patients with sleep-related problems.
Other resource N32 Cincinnati Regional Sleep Centerhttp://www.cincinnatisleepcenter.com Cincinnati Regional Sleep CenterTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Patient education, FAQ and location of their various centers.
Other resource N33 SSRD Anti-Snoring Treatment Centerhttp://www.hakimi-online.com/ SSRD Anti-Snoring Treatment CenterTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Treatment with the Snore/Stress Relieving Device (SSRD). An effective, non-invasive oral device that attacks snoring and obstructive sleep apnea. Dr. Farhad Hakimi, New York.
Other resource N34 Sleepwellhttp://www.sleeptest.com SleepwellTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Diagnostic center, in a hotel setting. Located in Utah.
Other resource N35 Sydney Snoring Clinichttp://www.snoringclinic.com.au/index.php?fuseaction=services.snoring Sydney Snoring ClinicTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Offers laser surgery for snoring and sleep apnea carried out as an in-office or hospital procedure.
Other resource N36 Sleep Care Inc.http://www.sleepcareinc.com Sleep Care Inc.Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Creates and manages top quality sleep laboratory services, working with hospitals, physicians groups and facilities, as well as providing information for individuals.
Other resource N37 Yakima Sleep Centerhttp://www.yakimasleepcenter.com Yakima Sleep CenterTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers A nationally accredited center for the treatment of sleep disorders. Find info on the lab, tests and procedures and insurance coverage.
Other resource N38 Florida Sleep Disorder Centerhttp://www.floridasleep.com Florida Sleep Disorder CenterTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Learn about sleep disorders, the physicians, the offices and contact details.
Other resource N39 PhoenixSleep. Sleep Disorder Treatment Centershttp://www.phoenixsleep.com PhoenixSleep. Sleep Disorder Treatment CentersTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Operates a number of sleep centers around the country. Focuses on providing quality, reliable service to patients and referring physicians.
Other resource N40 Snoring Clinichttp://www.snoringclinic.com.au Snoring ClinicTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Offers laser surgery for snoring and sleep apnoea carried out as an in office or hospital procedure. Australia location.
Other resource N41 Sleep Assessment and Advisory Servicehttp://www.sleepspecialists.co.uk Sleep Assessment and Advisory ServiceTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Provides sleep services in London, UK and N. Ireland. Internet support for non-drug treatment of insomnia.
Other resource N42 Sleepwalkinghttp://serendip.brynmawr.edu/bb/neuro/neuro99/web1/Howard.html SleepwalkingTop/Health/Conditions_and_Diseases/Sleep_Disorders/Sleepwalking Biology 202 report.
Other resource N43 Society for Light Treatment and Biological Rhythmshttp://www.websciences.org/sltbr/ Society for Light Treatment and Biological RhythmsTop/Health/Conditions_and_Diseases/Sleep_Disorders/Biological_Rhythms A not-for-profit international organization founded in 1988 which aims to foster research, professional development and clinical applications in the fields of light therapy and biological rhythms.
Other resource N44 The Brain, Circadian Rhythms, and Clock Geneshttp://www.bmj.com/cgi/content/full/317/7174/1704 The Brain, Circadian Rhythms, and Clock GenesTop/Health/Conditions_and_Diseases/Sleep_Disorders/Biological_Rhythms British Medical Journal Article on circadian rhythms (1998). A clinical review.
Other resource N45 Light Sets the Molecular Controls of Circadian Rhythmhttp://www.rockefeller.edu/pubinfo/light.nr.html Light Sets the Molecular Controls of Circadian RhythmTop/Health/Conditions_and_Diseases/Sleep_Disorders/Biological_Rhythms Work conducted at the Rockefeller University indicates that light can reset the biological clock.
Other resource N46 Outside In Home Page : Info on SAD, Body Clock, Jetlag, Winter Depression and Lighthttp://www.outsidein.co.uk/ Outside In Home Page : Info on SAD, Body Clock, Jetlag, Winter Depression and LightTop/Health/Conditions_and_Diseases/Sleep_Disorders/Biological_Rhythms Light products and information on biological clock problems. Jet-lag calculator. Sales worldwide.
Other resource N47 Dr. Postolache - The Institute for Sports Chronobiologyhttp://www.drpostolache.com Dr. Postolache - The Institute for Sports ChronobiologyTop/Health/Conditions_and_Diseases/Sleep_Disorders/Biological_Rhythms Consulting on optimizing sports performance via optimizing sleep-wake schedules and biological rhythms.
Other resource N48 Sudden Infant Death Syndrome (SIDS) in the Child Care Settinghttp://www.cdc.gov/ncidod/hip/abc/facts40.htm Sudden Infant Death Syndrome (SIDS) in the Child Care SettingTop/Health/Conditions_and_Diseases/Sleep_Disorders/Life_Cycle_Sleep_Disorders U.S. National Center for Infectious Diseases Centers for Disease Control and Prevention information sheet.
Other resource N49 Sleepwalking in Childrenhttp://familydoctor.org/160.xml Sleepwalking in ChildrenTop/Health/Conditions_and_Diseases/Sleep_Disorders/Life_Cycle_Sleep_Disorders Definition, symptoms, and what a parent should do. American Academy of Family Physicians (AAFP).
Other resource N50 Psychiatry Treatment Updates - Sleep/Psychiatry Interfacehttp://www.medscape.com/Medscape/psychiatry/TreatmentUpdate/1999/tu01/public/toc-tu01.html Psychiatry Treatment Updates - Sleep/Psychiatry InterfaceTop/Health/Conditions_and_Diseases/Sleep_Disorders/Disturbed What is currently known about the genesis and treatment of insomnia and hypersomnolence, depression and sleep, sleep disturbances in PTSD, and pain and sleep? Read on to find out.
Other resource N51 National Organization for Rare Disorders, Inc.http://www.rarediseases.org/ National Organization for Rare Disorders, Inc.Top/Health/Conditions_and_Diseases/Rare_Disorders Information about NORD, its programs, special events and the variety of services offered. Includes a rare disease, organization and orphan drug database. Diseases are listed alphabetically for easy searching.
Other resource N52 Contact a Familyhttp://www.cafamily.org.uk Contact a FamilyTop/Health/Conditions_and_Diseases/Rare_Disorders Information about this organization as well as the CaF directory of specific conditions and rare disorders. Also details about the Rare Disorders Alliance - UK.
Other resource N53 Fibrous Dysplasia Support Onlinehttp://members.cox.net/fdsupport/index.html Fibrous Dysplasia Support OnlineTop/Health/Conditions_and_Diseases/Rare_Disorders For those seeking support and information concerning the rare bone diseases: fibrous dysplasia, McCune Albright Syndrome and Cherubism.
Other resource N54 Fibrosing Mediastinitishttp://www.fibrosingmediastinitis.com Fibrosing MediastinitisTop/Health/Conditions_and_Diseases/Rare_Disorders The least common, but most severe, late complication of histoplasmosis. Educational and research information. Includes interviews, patient stories, and a community forum.
Other resource N55 Office of Rare Diseaseshttp://rarediseases.info.nih.gov/ Office of Rare DiseasesTop/Health/Conditions_and_Diseases/Rare_Disorders Information on more than 6000 rare diseases, including current research, publications from scientific and medical journals, completed research, ongoing studies, and patient support groups.
Other resource N56 University of Washington: Werner Syndromehttp://www.pathology.washington.edu/werner/ University of Washington: Werner SyndromeTop/Health/Conditions_and_Diseases/Rare_Disorders/Progeria Images of persons with this disease and diagnostic criteria for WRN and contact information for a central repository of WS data and research and materials.
Other resource N57 NCBI: Genes and Diseaseshttp://www.ncbi.nlm.nih.gov/disease/Werner.html NCBI: Genes and DiseasesTop/Health/Conditions_and_Diseases/Rare_Disorders/Progeria Provides a short descriptions of the inherited disorder, Werner syndrome.
Other resource N58 NORD: Werner Syndromehttp://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Werner%20Syndrome NORD: Werner SyndromeTop/Health/Conditions_and_Diseases/Rare_Disorders/Progeria Offers alternative names, a general discussion and further resources.
Other resource N59 NORD: Degos Diseasehttp://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Degos%20Disease NORD: Degos DiseaseTop/Health/Conditions_and_Diseases/Rare_Disorders/Degos Sample report, plus links to organisations. [Fee required for full report.]
Other resource N60 The Vater Connectionhttp://www.vaterconnection.org/ The Vater ConnectionTop/Health/Conditions_and_Diseases/Rare_Disorders/VATER_Syndrome Support organization created by parents of children diagnosed with VATER Association
Other resource N61 EA/TEF Family Support Connectionhttp://www.eatef.org/ EA/TEF Family Support ConnectionTop/Health/Conditions_and_Diseases/Rare_Disorders/VATER_Syndrome Formed by and for families of children born with EA/TEF (Esophageal Atresia and Tracheoesophageal Fistula) and the medical professionals who treat them.
Other resource N62 Merck Manual: Wegener's Granulomatosishttp://www.merck.com/pubs/mmanual/section5/chapter50/50n.htm Merck Manual: Wegener's GranulomatosisTop/Health/Conditions_and_Diseases/Rare_Disorders/Wegener's_Granulomatosis Chapter covering etiology, pathology, symptoms, diagnosis and treatment for this uncommon illness.
Other resource N63 Virtual Hospital Curriculum: Wegener's Granulomatosishttp://www.vh.org/Providers/TeachingFiles/PulmonaryCoreCurric/Wegeners/Wegeners.html Virtual Hospital Curriculum: Wegener's GranulomatosisTop/Health/Conditions_and_Diseases/Rare_Disorders/Wegener's_Granulomatosis Curriculum materials, images and references for proper diagnosis of this disease.
Other resource N64 Living with Wegener's Granulomatosishttp://arniemarge.tripod.com/arnieepistle.html Living with Wegener's GranulomatosisTop/Health/Conditions_and_Diseases/Rare_Disorders/Wegener's_Granulomatosis The author tells of her ordeal because there are millions of people who could contract this disease, and in the hopes that this article helps them or their physician to diagnose earlier.
Other resource N65 Agnosiahttp://www.ninds.nih.gov/health_and_medical/disorders/agnosia.htm AgnosiaTop/Health/Conditions_and_Diseases/Rare_Disorders/Agnosia Information sheet compiled by the National Institute of Neurological Disorders and Stroke (NINDS).
Other resource N66 Cystinosis Research Networkhttp://www.cystinosis.org Cystinosis Research NetworkTop/Health/Conditions_and_Diseases/Rare_Disorders/Cystinosis Information about the organization and their mission. Extensive database about the disease as well as support groups, research and links to other resources.
Other resource N67 Corpalhttp://freespace.virgin.net/jan.webster/index.htm CorpalTop/Health/Conditions_and_Diseases/Rare_Disorders/Aicardi_Syndrome A support group for the families and carers of those affected by this condition. Includes information and reports, letters, and resources.
Other resource N68 NINDS: Agenesis of the Corpus Callosumhttp://www.ninds.nih.gov/health_and_medical/disorders/agenesis_doc.htm NINDS: Agenesis of the Corpus CallosumTop/Health/Conditions_and_Diseases/Rare_Disorders/Aicardi_Syndrome Information sheet by the National Institute of Neurological Disorders and Stroke, including symptoms, treatment and prognosis.
Other resource N69 Meganhttp://www.geocities.com/nygblue11/2nd.html MeganTop/Health/Conditions_and_Diseases/Rare_Disorders/Aicardi_Syndrome A positive personal account.
Other resource N70 A Natural History of Cleidocranial Dysplasiahttp://www.faseb.org/genetics/ashg99/f181.htm A Natural History of Cleidocranial DysplasiaTop/Health/Conditions_and_Diseases/Rare_Disorders/Cleidocranial_Dysplasia An article from Baylor College of Medicine.
Other resource N71 NORD - Cerebrocostomandibular Syndromehttp://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Cerebrocostomandibular%20Syndrome NORD - Cerebrocostomandibular SyndromeTop/Health/Conditions_and_Diseases/Rare_Disorders/Cerebrocostomandibular_Syndrome Sample report, plus links to organisations. [Fee required for full report]
Other resource N72 NINDS: Moyamoya Diseasehttp://www.ninds.nih.gov/health_and_medical/disorders/moyamoya.htm NINDS: Moyamoya DiseaseTop/Health/Conditions_and_Diseases/Rare_Disorders/Moyamoya Description, treatment and prognosis from the National Institute of Neurological Disorders and Stroke.
Other resource N73 Moyamoya Diseasehttp://www003.upp.so-net.ne.jp/moya-moya/ Moyamoya DiseaseTop/Health/Conditions_and_Diseases/Rare_Disorders/Moyamoya Diagnosis, treatment and prognosis, plus problems specific to women.
Other resource N74 Pediatric Oncallhttp://www.pediatriconcall.com/fordoctor/casereports/MoyaMoya.asp Pediatric OncallTop/Health/Conditions_and_Diseases/Rare_Disorders/Moyamoya Offers moyamoya disease case reports.
Other resource N75 Chase's Storyhttp://www.pierrerobin.com Chase's StoryTop/Health/Conditions_and_Diseases/Rare_Disorders/Pierre_Robin_Syndrome Personal account of one child's experience of this condition. Includes photographs.
Other resource N76 Pemphigushttp://www.pemphigus.com PemphigusTop/Health/Conditions_and_Diseases/Rare_Disorders/Pemphigus Information on the types and treatments.
Other resource N77 Pemphigus Hubhttp://www.healthubs.com/pemphigus Pemphigus HubTop/Health/Conditions_and_Diseases/Rare_Disorders/Pemphigus Includes links to case studies, images, abstracts and personal experiences.
Other resource N78 Children's PKU Networkhttp://www.pkunetwork.org/ Children's PKU NetworkTop/Health/Conditions_and_Diseases/Rare_Disorders/Phenylketonuria Organisation offering education and direct assistance. Includes details of projects, plus links to food suppliers.
Other resource N79 Medline Plus: Phenylketonuriahttp://www.nlm.nih.gov/medlineplus/ency/article/001166.htm Medline Plus: PhenylketonuriaTop/Health/Conditions_and_Diseases/Rare_Disorders/Phenylketonuria Definition, causes, symptoms and treatment.
Other resource N80 Pediatric Oncallhttp://www.pediatriconcall.com/fordoctor/diseasesandcondition/pku.asp Pediatric OncallTop/Health/Conditions_and_Diseases/Rare_Disorders/Phenylketonuria In-depth look at Phenylketonuria (PKU). Includes symptoms, diagnosing, newborn screening, treatment and follow up.

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