Alström Syndrome

site URL - http://www.jax.org/alstrom

Site description: Clinical features, literature and research. Includes guidelines for health care professionals.




Topic: Top/Health/Conditions_and_Diseases/Rare_Disorders/Alström_Syndrome

LINKURI & TITLEDESCRIPTION & TOPIC
Previous 10The Fragile WEB Sitehttp://web.ukonline.co.uk/c.jones/contents.htm The Fragile WEB SiteTop/Health/Conditions_and_Diseases/Rare_Disorders/Jacobsen_Syndrome Includes a reference database, family support groups and clinical information.
PreviousThe Merck Manual: Erythromelalgiahttp://www.merck.com/pubs/mmanual/section16/chapter212/212f.htm The Merck Manual: ErythromelalgiaTop/Health/Conditions_and_Diseases/Rare_Disorders/Erythromelalgia A basic description of this disorder, which causes severe burning, pain, and redness, primarily in the hands and feet.
Random 1X-Ray Service and Supply, Inc.http://home.pcisys.net/~xrayservice/ X-Ray Service and Supply, Inc.Top/Business/Healthcare/Products_and_Services/Diagnostic/Radiology Made in USA x-ray film, from panoramic to full spine, at excellent prices.
Random 2Projet d'Evidence-Based Medicine appliquée à l'urologie (EBM)http://www.ebm.lib.ulg.ac.be/prostate/ Projet d'Evidence-Based Medicine appliquée à l'urologie (EBM)Top/World/Français/Santé/Médecine/Spécialités_médicales/Urologie Présente les principes pour l'étude du cancer de la prostate et, en particulier, aux marqueurs tumoraux étudiés dans ce type de cancer. Université de Liège, Belgique.
Random 3Piper methysticum - Veterinary Monographhttp://www.vbma.org/herbs/kavakava5-02.html Piper methysticum - Veterinary MonographTop/Health/Animal/Alternative_Medicine/Herbs/Kava_kava Veterinary applications of kava kava by Ihor Basko, DVM, President Veterinary Botanical Medical Association.
Random 4Steward Connectorhttp://www.stewartconnector.com/ Steward ConnectorTop/Business/Electronics_and_Electrical/Electromechanical/Hardware/Interconnection_Systems Designer and manufacturer of modular jacks and plugs for the telecommunications, local area network, data processing, medical instrumentation, automotive, and industrial markets. Online line card, specifications and PDF data sheets available for download.
Random 5Lemoine Grouphttp://www.groupe-lemoine.com/ Lemoine GroupTop/Business/Healthcare/Products_and_Services Cotton-buds and cotton pads manufacturing.
NextSmart Groups: Alström Familieshttp://smartgroups.com/groups/alstromfamilies Smart Groups: Alström FamiliesTop/Health/Conditions_and_Diseases/Rare_Disorders/Alström_Syndrome Mailing list, pictures, links and files.
Next 10Allergyhttp://www.sinuses.com/allergy.htm AllergyTop/Health/Conditions_and_Diseases/Allergies In-depth look at this disorder including general information, environmental problems, food, medical problems, medicines, testing, allergy shots and frequently asked questions.
Random 1Review of Disney's Brother Bearhttp://www.philcollinsfansite.com/brother-bear.html Review of Disney's Brother BearTop/Arts/Animation/Movies/Titles/Brother_Bear Offers a review of the movie and a listing of the soundtrack songs.
Random 4Fink Engineering Pty Ltd.http://www.fink.com.au/ Fink Engineering Pty Ltd.Top/Business/Healthcare/Products_and_Services/Hyperbaric/Chamber_Manufacturers Designing and constructing rectangular facilities for medical applications. Includes product photographs and company news. Melbourne, Australia.
Random 4Cyber Angel's Home Pagehttp://www.angelfire.com/ma/CyberspaceAngel/index.html Cyber Angel's Home PageTop/Arts/Animation/Anime/Fandom/C Image galleries, fan works, and general information for series including Kenshin, Yu Yu Hakusho, Sailor Moon, and Fushigi Yuugi.
Next 70Seasonal Allergy Centerhttp://allergies.realage.com Seasonal Allergy CenterTop/Health/Conditions_and_Diseases/Allergies Learn how to identify allergies and ease symptoms. For those who suffer from a seasonal, nasal, sinus, or spring allergy.
Previous 70Wegener's Granulomatosishttp://www.geocities.com/wbh7777/wegen.html Wegener's GranulomatosisTop/Health/Conditions_and_Diseases/Rare_Disorders/Wegener's_Granulomatosis Provides a chat, forum, and links to health pages.
Next 170Food You Can Eathttp://www.foodyoucaneat.com/food/ Food You Can EatTop/Health/Conditions_and_Diseases/Allergies/Food Methods of selection and preparation of food for sufferers of food allergies.
Previous 170Summit 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.
Next 270
Previous 270eMedicine Health - Narcolepsyhttp://www.emedicinehealth.com/articles/42505-1.asp eMedicine Health - NarcolepsyTop/Health/Conditions_and_Diseases/Sleep_Disorders/Narcolepsy Consumer health resource center providing information on the causes, symptoms, and treatment.
Other resource N0 Sleep Research Laboratoryhttp://www.lboro.ac.uk/departments/hu/groups/sleep/ Sleep Research LaboratoryTop/Health/Conditions_and_Diseases/Sleep_Disorders/Research Sleep Laboratory at Loughborough University, England.
Other resource N1 European Data Format (EDF)http://www.hsr.nl/edf European Data Format (EDF)Top/Health/Conditions_and_Diseases/Sleep_Disorders/Research File format for archival and exchange of sleep and EEG data.
Other resource N2 Clinilabshttp://www.clinilabs.com ClinilabsTop/Health/Conditions_and_Diseases/Sleep_Disorders/Research Information about sleep disorders and conditions. Also includes information about clinical trials, a sleep quiz, and downloadable sleep inventory guide for people with sleeping problems.
Other resource N3 WFSRS-HOMEhttp://www.wfsrs.org/homepage.html WFSRS-HOMETop/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations Founded in 1987, this professional international federation encourages collaboration into the areas of sleep research and sleep medicine.
Other resource N4 The American Sleep Apnea Associationhttp://www.sleepapnea.org/ The American Sleep Apnea AssociationTop/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations The American Sleep Apnea Association is a non-profit organization concerned health care promotes education, awareness and research into sleep apnea.
Other resource N5 The School of Sleep Medicinehttp://www.sleepedu.net/ssm.shtml The School of Sleep MedicineTop/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations Runs courses on sleep medicine ranging from basic to advance, pediatric to adult. CMEs and preparation for board certification.
Other resource N6 WHO: Mental disorders in Primary Health Carehttp://www.who.int/msa/mnh/ems/primacare/edukit/index.htm WHO: Mental disorders in Primary Health CareTop/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations World Health Organisation education packs on mental disorders in primary care (including sleep disorders).
Other resource N7 Journal of Sleep Researchhttp://www.blacksci.co.uk/~cgilib/jnlpage.bin?Journal=jsr&File=jsr&Page=aims Journal of Sleep ResearchTop/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations Official Journal of the European Sleep Research Society
Other resource N8 National Center on Sleep Disorders Researchhttp://rover.nhlbi.nih.gov/about/ncsdr/ National Center on Sleep Disorders ResearchTop/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations Part of the National Heart, Lung, and Blood Institute (NHLBI). Coordinates government-sponsored sleep research, training and education.
Other resource N9 American Sleep Research Institutehttp://www.asri.net/ American Sleep Research InstituteTop/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations Conducts tests of mattresses and other sleep products.
Other resource N10 Sleep/Wake Disorders Canadahttp://www.hc-sc.gc.ca/hppb/healthcare/pubs/selfcare/8en.htm Sleep/Wake Disorders CanadaTop/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations A national association of volunteers dedicated to fostering the interests of people suffering from sleep/wake disorders by distributing information, encouraging research, establishing self-help groups, and acting as an advocate when necessary.
Other resource N11 A.I.P.A.S.http://www.sleepapnea-online.it A.I.P.A.S.Top/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations The first Italian Patients Association for Sleep Apnea. Multilingual site offering information and an apnea test.
Other resource N12 Awake In America, Inc.http://www.AwakeInAmerica.org Awake In America, Inc.Top/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations A national organization focused on patient and public education and awareness of sleep and sleep disorders, helping others launch support groups, and doing other outreach.
Other resource N13 The Periodic Paralysis Resource Centerhttp://www.periodicparalysis.org/PPA/ The Periodic Paralysis Resource CenterTop/Health/Conditions_and_Diseases/Sleep_Disorders/Sleep_Paralysis This site provides information on sleep paralysis as well as daytime paralysis.
Other resource N14 Restless Leg Syndrome Organizationhttp://www.rls.org Restless Leg Syndrome OrganizationTop/Health/Conditions_and_Diseases/Sleep_Disorders/Restless_Legs_Syndrome Home of the Restless Legs Syndrome Organization. Full of helpful information for sufferers and their friends and families.
Other resource N15 Ohio Sleep Medicine Institutehttp://www.sleepohio.com/ Ohio Sleep Medicine InstituteTop/Health/Conditions_and_Diseases/Sleep_Disorders/Restless_Legs_Syndrome Ohio Sleep Clinic with many helpful links and a lot of information for sufferers of Restless Legs Syndrome, Periodic Limb Movement Disorder, Sleep Apnea, Narcolepsy and other sleep disorders.
Other resource N16 Molly z.'s Sleep Disorders - About PLMDhttp://www.trishs.net/plmd/index.html Molly z.'s Sleep Disorders - About PLMDTop/Health/Conditions_and_Diseases/Sleep_Disorders/Restless_Legs_Syndrome Personal experience with Periodic Limb Movement Disorder, symptoms and treatment. Some sleep disorders information, personal opinions, frequently asked questions, forum and a sleep poll.
Other resource N17 Helpguide.org - Restless Legs Syndrome (RLS)http://www.helpguide.org/aging/rls.htm Helpguide.org - Restless Legs Syndrome (RLS)Top/Health/Conditions_and_Diseases/Sleep_Disorders/Restless_Legs_Syndrome Describes RLS and periodic limb movement disorder and their symptoms, diagnosis, and treatment options. Includes a symptom questionnaire.
Other resource N18 Scottish National Sleep Centrehttp://www.show.scot.nhs.uk/sleep/index.htm Scottish National Sleep CentreTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Sleep apnoea/hypopnoea syndrome (SAHS), narcolepsy, and periodic limb movement syndrome (PLMS). Royal Infirmary of Edinburgh.
Other resource N19 Providence Sleep Disorders Centerhttp://www.providence.org/sleep/ Providence Sleep Disorders CenterTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Consumer and professional information at this Seattle, WA based medical center site includes 'Treating Sleep Disorders', 'Oral Appliances for Sleep Apnea', and 'Pediatric Sleep Disorders'.
Other resource N20 N2 Sleephttp://www.n2sleep.com/ N2 SleepTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Providing educational and consultative services for people in the field of sleep medicine.
Other resource N21 Sleep Disorders Centerhttp://www.sleepscene.com/ Sleep Disorders CenterTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Sequoia Health Services. Information about many sleep disorders, including those in children and the elderly. Online sleep test and on-line referrals for physicians.
Other resource N22 Midwest Sleep and Neurodiagnostic Institutehttp://www.mwsleep.com/ Midwest Sleep and Neurodiagnostic InstituteTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Information and education on various sleep disorders such as sleep apnea, Narcolepsy and insomnia.
Other resource N23 Synapse Media - Sleep Medicine and Polysomnographyhttp://www.synapsemedia.com Synapse Media - Sleep Medicine and PolysomnographyTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Synapse Media - an Oregon-based company dedicated to providing training and education in sleep medicine and technology, with emphasis on laboratory methodology and clinical polysomnography.
Other resource N24 The Sleep Disorder Clinichttp://www.snoring-clinic.co.uk The Sleep Disorder ClinicTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Information about the facility, the problems, causes, laser treatment, research and contact details.
Other resource N25 Sleepcare Diagnostics Home Pagehttp://www.snorenomore.com/ Sleepcare Diagnostics Home PageTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Sleep Disorders, Cincinnati, Ohio.
Other resource N26 The Vancouver Sleep and Breathing Centrehttp://www.sleep-breathing.bc.ca/ The Vancouver Sleep and Breathing CentreTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers The Vancouver Sleep and Breathing Centre is a clinic which specializes in the diagnosis and treatment of Snoring, Sleep Apnea, Asthma, and other common Disorders of Sleep and Breathing.
Other resource N27 North Bay Sleep Medicine Institutehttp://www.nbsmi.com North Bay Sleep Medicine InstituteTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Located in Santa Rosa, California. Medical Specialists for snoring, sleep apnea, restless legs and insomnia. Includes information for clinicians, patients and contact details.
Other resource N28 Prescription for Sleep, L.L.C.http://www.prescriptionforsleep.com Prescription for Sleep, L.L.C.Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Offering practical solutions for sleep problems in the workplace and in the schoolroom
Other resource N29 Ohio Sleep Medicine Institutehttp://www.sleepohio.com Ohio Sleep Medicine InstituteTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Sleep disorders clinic with both treatment and research facilities.
Other resource N30 Sleep Services of Americahttp://www.sleepservices.net Sleep Services of AmericaTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers An affiliate of Johns Hopkins, HSI Medical Services Corporation/Sleep Services of America is a provider of sleep diagnosis and treatment services in the Mid-Atlantic region.
Other resource N31 Kathryn Severyns Dement Sleep Disorders Center at St. Mary Medical Centerhttp://www.smmc.com/sleep/ Kathryn Severyns Dement Sleep Disorders Center at St. Mary Medical CenterTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Prior to full accreditation by the American Academy of Sleep Medicine, the center began as the "Walla Walla Project" which aimed to train primary care physicians to diagnose and treat sleep disorders.
Other resource N32 The Technion-Sleep Laboratory and Sleep Disorders Centerhttp://www.sleeplab.co.il/ The Technion-Sleep Laboratory and Sleep Disorders CenterTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers This research laboratory located in Israel started before there was a field of sleep medicine.
Other resource N33 The Torrance Center for Sleephttp://tc4s.com/indexa.htm The Torrance Center for SleepTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Practice based in Torrance, California.
Other resource N34 The London Sleep Centrehttp://www.londonsleepcentre.com The London Sleep CentreTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Diagnosis and treatment of sleep disorders including insomnia, and sleep apnoea. Offers scientific diagnostic assessments.
Other resource N35 Diagnostic Health Services, Inc.http://www.sleepagain.com Diagnostic Health Services, Inc.Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Services include full polysomnography including respiratory monitoring. Offers two independent sleep disorder testing facilities in Maine.
Other resource N36 UCSF Sleep Disorder Centerhttp://www.ucsfhealth.org/adult/medical_services/neuro/sleep_disorders/index.html UCSF Sleep Disorder CenterTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Information on the signs and symptoms, diagnosis and treatment of sleep disorders.
Other resource N37 Sleep Well Clinichttp://www.sleepwellclinic.co.nz Sleep Well ClinicTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Based in Christchurch, New Zealand. Offers treatment for sleep disorders such as insomnia, snoring, sleep apnoea, and shiftworkers.
Other resource N38 Alabama School of Sleep Medicine and Technologyhttp://www.alsleep.com Alabama School of Sleep Medicine and TechnologyTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Alabama sleep school providing sleep medicine, sleep disorders and polysomnography training and education.
Other resource N39 Mid-West Center For Sleep Disordershttp://www.mwcsd.com Mid-West Center For Sleep DisordersTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Utilizes the latest technology for diagnosing and treating sleep/wake disorders. Located in Brighton, Michigan.
Other resource N40 REM Sleep Diagnosticshttp://www.remsleepdiagnostics.com REM Sleep DiagnosticsTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Located in Huntsville, Texas, a modern sleep clinic that provides diagnostic sleep studies for people with symptoms of Sleep Apnea and other sleep disorders.
Other resource N41 St. John's Medical Plaza Sleep Disorder Centerhttp://www.stjohnsleep.com/ St. John's Medical Plaza Sleep Disorder CenterTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers This center is affiliated with St. John's Hospital and fully accredited by the American Academy of Sleep Medicine. Find information about the clinic, clinical studies and the location.
Other resource N42 Sleep Medicine Northwesthttp://www.sleepnw.com Sleep Medicine NorthwestTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Sleep medicine clinic and laboratory in Seattle treating all types of sleep disorders, including fatigue, sleepiness, insomnia, apnea, snoring, narcolepsy, and restless leg syndrome.
Other resource N43 E Law - Murdoch University Electronic Journal of Law, Vol 3, No 1 (May 1996)http://www.murdoch.edu.au/elaw/issues/v3n1/ridgway.html E Law - Murdoch University Electronic Journal of Law, Vol 3, No 1 (May 1996)Top/Health/Conditions_and_Diseases/Sleep_Disorders/Sleepwalking Legal paper on sleepwalking discussing whether any crime committed in this state should be classified as 'Insanity' or an 'Automatism'
Other resource N44 American Society for Gravitational and Space Biology -- Desert Beetle Circadian Rhythm Study Begins on Mirhttp://asgsb.indstate.edu/newsletter/v13_2/beetle.html American Society for Gravitational and Space Biology -- Desert Beetle Circadian Rhythm Study Begins on MirTop/Health/Conditions_and_Diseases/Sleep_Disorders/Biological_Rhythms When Space Shuttle Atlantis docked with Mir on May 15, it delivered 64 desert beetles for a circadian rhythm study to understand how the space flight environment changes the body's internal clock.
Other resource N45 Dawn Simulatorshttp://www.pi-square.com/ Dawn SimulatorsTop/Health/Conditions_and_Diseases/Sleep_Disorders/Biological_Rhythms A look at a stimulating apparatus to help with Seasonal Affective Disorder.
Other resource N46 Mental Health Net - Circadian Rhythm Sleep Disorder Symptomshttp://mentalhelp.net/disorders/sx92.htm Mental Health Net - Circadian Rhythm Sleep Disorder SymptomsTop/Health/Conditions_and_Diseases/Sleep_Disorders/Biological_Rhythms General symptoms of circadian rhythm sleep disorder.
Other resource N47 Scientists Find Eye Pigment Controls Circadian Rhythmhttp://www.eurekalert.org/pub_releases/1998-11/UoNC-DECN-191198.php Scientists Find Eye Pigment Controls Circadian RhythmTop/Health/Conditions_and_Diseases/Sleep_Disorders/Biological_Rhythms A brief report on an eye pigment, cryptochrome, which appears to control mammals' circadian rhythms.
Other resource N48 The Treatment of Sleep Disorders in Older Peoplehttp://text.nlm.nih.gov/nih/cdc/www/78txt.html The Treatment of Sleep Disorders in Older PeopleTop/Health/Conditions_and_Diseases/Sleep_Disorders/Life_Cycle_Sleep_Disorders National Institutes of Health Consensus Development Conference Statement, March 26-28, 1990. Comprehensive.
Other resource N49 Comfortable Sleep Position during Pregnancyhttp://www.parenthoodweb.com/articles/phw266.htm Comfortable Sleep Position during PregnancyTop/Health/Conditions_and_Diseases/Sleep_Disorders/Life_Cycle_Sleep_Disorders Parenthood article.
Other resource N50 Epilepsy & sleep disordershttp://dem0nmac.mgh.harvard.edu/neurowebforum/EpilepsyArticles/epilepsysleepdisorders.html Epilepsy & sleep disordersTop/Health/Conditions_and_Diseases/Sleep_Disorders/Disturbed Article from the neurowebforum
Other resource N51 NINDS Kleine-Levin Syndrome Information Pagehttp://www.ninds.nih.gov/disorders/kleine_levin/kleine_levin.htm NINDS Kleine-Levin Syndrome Information PageTop/Health/Conditions_and_Diseases/Sleep_Disorders/Disturbed Offers an information sheet compiled by the National Institute of Neurological Disorders and Stroke (NINDS).
Other resource N52 International Rare Disease Support Networkhttp://www.raredisorders.com International Rare Disease Support NetworkTop/Health/Conditions_and_Diseases/Rare_Disorders A community providing more than a 1000 different links to support groups for the people of all nations.
Other resource N53 Nomid /Cincahttp://pweb.netcom.com/~jkbarton/nomid/Html/nomid_home_page.htm Nomid /CincaTop/Health/Conditions_and_Diseases/Rare_Disorders Resource for parents and patients suffering from Neonatal Onset Multi-inflammatory Disease Chronic, or Infantile, Neurologic, Cutaneous and Articular syndrome. Site maintained by patients, parents and friends for their counterparts worldwide. Email support group at eGroups.
Other resource N54 Kindler Syndromehttp://digilander.libero.it/camdic/KINDLER.html Kindler SyndromeTop/Health/Conditions_and_Diseases/Rare_Disorders An article and case study of this rare disease. Includes links.
Other resource N55 Mascot McCune Allbright Syndrome Communication Online Townhttp://www.mascot.altervista.org Mascot McCune Allbright Syndrome Communication Online TownTop/Health/Conditions_and_Diseases/Rare_Disorders Collects all the brand new studies in McCune syndrome and perform a FAQ session to explain what the disease is. It is a sharing experience place for ill people.
Other resource N56 eMedicine: Bullous pemphigoidhttp://www.emedicine.com/derm/topic64.htm eMedicine: Bullous pemphigoidTop/Health/Conditions_and_Diseases/Rare_Disorders/Pemphigoid In depth article covering clinical information, diagnosis, and treatment. Includes prescribing information.
Other resource N57 Progeria Research Foundation, Inc.http://progeriaresearch.org Progeria Research Foundation, Inc.Top/Health/Conditions_and_Diseases/Rare_Disorders/Progeria Medical research, education, support, and fundraising for this "pre-mature aging" disease.
Other resource N58 Progeria Family Circlehttp://www.progeriafamilycircle.de/ Progeria Family CircleTop/Health/Conditions_and_Diseases/Rare_Disorders/Progeria Overview of the rare disorder, symptoms, and experiences of children with Progeria and their families.
Other resource N59 Progeria Project Foundationhttp://www.progeriaproject.com/ Progeria Project FoundationTop/Health/Conditions_and_Diseases/Rare_Disorders/Progeria A group concerned about the well-being and quality of life for Progeria children and their families.
Other resource N60 Degos Patients' Support Networkhttp://www.degosdisease.com Degos Patients' Support NetworkTop/Health/Conditions_and_Diseases/Rare_Disorders/Degos Advice, support, news, and a forum for patients with Degos disease (Malignant Atrophic Papulosis), their families and carers and medical advisers.
Other resource N61 A Problem Sharedhttp://www.tofs.org.uk A Problem SharedTop/Health/Conditions_and_Diseases/Rare_Disorders/VATER_Syndrome The TOFS Support Group was founded in 1982 in response to the needs of children born with Tracheo-Oesophageal Fistula and associated conditions.
Other resource N62 Zoe Lamberthttp://www.zoelambert.com Zoe LambertTop/Health/Conditions_and_Diseases/Rare_Disorders/VATER_Syndrome Personal account of this condition, and surgery to receive titanium rib implants.
Other resource N63 Wegener's Granulomatosis Sitehttp://www.angelfire.com/ga/wegeners/ Wegener's Granulomatosis SiteTop/Health/Conditions_and_Diseases/Rare_Disorders/Wegener's_Granulomatosis Personal site by a patient in Sweden containing general information about the illness and resources for patients.
Other resource N64 Wegener's Granulomatosishttp://www.geocities.com/wbh7777/wegen.html Wegener's GranulomatosisTop/Health/Conditions_and_Diseases/Rare_Disorders/Wegener's_Granulomatosis Provides a chat, forum, and links to health pages.
Other resource N65 WegenersNethttp://www.wegenersnet.org WegenersNetTop/Health/Conditions_and_Diseases/Rare_Disorders/Wegener's_Granulomatosis Community featuring live chat, message board, discussion forums, member profiles, and information on Wegener's Granulomatosis and its treatment.
Other resource N66 Visual Agnosiahttp://www.stir.ac.uk/departments/humansciences/psychology/Postgrads/pgm1/Net_Presentation/tsld017.htm Visual AgnosiaTop/Health/Conditions_and_Diseases/Rare_Disorders/Agnosia List of features for this disorder.
Other resource N67 Cystinosis Foundationhttp://www.cystinosisfoundation.org Cystinosis FoundationTop/Health/Conditions_and_Diseases/Rare_Disorders/Cystinosis Includes brochures, FAQs, medical exchange, research, and a message forum as well as details about the organization and its events, conferences and fund raising.
Other resource N68 Contact a Family: Aicardi Syndromehttp://www.cafamily.org.uk/Direct/a28.html Contact a Family: Aicardi SyndromeTop/Health/Conditions_and_Diseases/Rare_Disorders/Aicardi_Syndrome General information, including associated conditions, plus inheritance patterns.
Other resource N69 Medline Plus: Aicardi Syndromehttp://www.nlm.nih.gov/medlineplus/ency/article/001664.htm Medline Plus: Aicardi SyndromeTop/Health/Conditions_and_Diseases/Rare_Disorders/Aicardi_Syndrome Definition, symptoms, signs and treatments. Includes support group information plus an illustration.
Other resource N70 National Library of Medicine: Cleidocranial Dysplasia (CCD, CLCD)http://www.nlm.nih.gov/mesh/jablonski/syndromes/syndrome233.html National Library of Medicine: Cleidocranial Dysplasia (CCD, CLCD)Top/Health/Conditions_and_Diseases/Rare_Disorders/Cleidocranial_Dysplasia A list of synonyms, summary and major features.
Other resource N71 MedicineNet.com: Cleidocranial Dysplasiahttp://www.medicinenet.com/Script/Main/Art.asp?li=MNI&ArticleKey=6549 MedicineNet.com: Cleidocranial DysplasiaTop/Health/Conditions_and_Diseases/Rare_Disorders/Cleidocranial_Dysplasia Basic information.
Other resource N72 Melorheostosishttp://www.melorheostosis.com MelorheostosisTop/Health/Conditions_and_Diseases/Rare_Disorders/Melorheostosis Personal histories and a message board, alongside links to research.
Other resource N73 Moyamoya Diseasehttp://chorus.rad.mcw.edu/doc/01076.html Moyamoya DiseaseTop/Health/Conditions_and_Diseases/Rare_Disorders/Moyamoya Definition, clinical symptoms and radiographic finding.
Other resource N74 Moyamoya Diseasehttp://www.moyamoya.com Moyamoya DiseaseTop/Health/Conditions_and_Diseases/Rare_Disorders/Moyamoya Support group for those diagnosed with this condition and their families. Includes medical information, personal account, links and a message board.
Other resource N75 Pierre Robin Networkhttp://www.pierrerobin.org Pierre Robin NetworkTop/Health/Conditions_and_Diseases/Rare_Disorders/Pierre_Robin_Syndrome Provides general information about the condition, including genetics, issues and a glossary. Also offers an email group, message board, and personal accounts.
Other resource N76 NORD - Pierre Robin Syndromehttp://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Pierre%20Robin%20Syndrome NORD - Pierre Robin SyndromeTop/Health/Conditions_and_Diseases/Rare_Disorders/Pierre_Robin_Syndrome Sample report, plus links to organisations. [Fee required for full report]
Other resource N77 Pemphigus Vulgarishttp://www.chronicillnet.org/online/lehne.html Pemphigus VulgarisTop/Health/Conditions_and_Diseases/Rare_Disorders/Pemphigus An article explaining the seriousness of the condition.
Other resource N78 The Pemphigus and Pemphigoid Societyhttp://www.1clever.org/ The Pemphigus and Pemphigoid SocietyTop/Health/Conditions_and_Diseases/Rare_Disorders/Pemphigus Find information about PPS, publications, an online support group, articles and a medical glossary.
Other resource N79 National PKU Newshttp://pkunews.org/ National PKU NewsTop/Health/Conditions_and_Diseases/Rare_Disorders/Phenylketonuria Organisation providing information and news to families and professionals. Includes general information about the condition, dietary advice, research, personal stories and support.
Other resource N80 Phenylketonuriahttp://www.medhelp.org/lib/pku.htm PhenylketonuriaTop/Health/Conditions_and_Diseases/Rare_Disorders/Phenylketonuria Definition, causes, symptoms and treatments.

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