site URL - http://www.med.jhu.edu/CMSL/Barth_Summary.html
Site description: An article about Barth Syndrome with a description, clinical manifestations, etiology, epidemiology, diagnosis, prognosis and management.
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| LINK | URI & TITLE | DESCRIPTION & TOPIC | |
| Previous 10 | National PKU News | http://pkunews.org/ National PKU News | Top/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. |
| Previous | Rubinstein Taybi Syndrome Support Group (UK) | http://www.rtsuk.org/ Rubinstein Taybi Syndrome Support Group (UK) | Top/Health/Conditions_and_Diseases/Rare_Disorders/Rubinstein-Taybi_Syndrome Information, forum, links, contacts, and guestbook. |
| Random 1 | Royal College of Physicians | http://www.rcplondon.ac.uk/pubs/brochures/pub_print_SIC.htm Royal College of Physicians | Top/Health/Conditions_and_Diseases/Neurological_Disorders/Stroke/Pediatric Offers a publication entitled Stroke in Childhood; Clinical guidelines for diagnosis, management and rehabilitation. Order the publication or read it online free. |
| Random 2 | Physicians' Desk Reference 2003 | http://dir.incredishop.com Physicians' Desk Reference 2003 | Top/Regional/Europe/Romania/Health Collection of health resources including physicians medical journals. |
| Random 3 | Diphtheria - Dr. Greene | http://www.drgreene.com/21_1071.html Diphtheria - Dr. Greene | Top/Health/Conditions_and_Diseases/Infectious_Diseases/Bacterial/Diphtheria Information on this childhood disease and immunization against it. |
| Random 4 | AIDS Information Dissemination Site - Southern Africa | http://www2.wn.apc.org/sahivaids/ AIDS Information Dissemination Site - Southern Africa | Top/Health/Conditions_and_Diseases/Immune_Disorders/Immune_Deficiency/AIDS/Regional/Africa AIDS/HIV Publications and Resources Database. |
| Random 5 | Landon Pediatric Foundation | http://www.rain.org/~landon/Heartweb/index.html Landon Pediatric Foundation | Top/Health/Conditions_and_Diseases/Cardiovascular_Disorders/Heart_Disease/Murmurs Fred Leong M.D looks at common heart sounds and murmurs in infants, innocent murmurs, pathologic murmurs, and diastolic continuous murmurs. Audio as well to hear the heart sounds. |
| Next | The Complete Barth Syndrome Homepage | http://www.csun.edu/~hcbio033/barth.html The Complete Barth Syndrome Homepage | Top/Health/Conditions_and_Diseases/Rare_Disorders/Barth_Syndrome List of clinical symptoms, history of the condition, current news, and links to support groups. |
| Next 10 | The Erythromelalgia Association | http://www.erythromelalgia.org/ The Erythromelalgia Association | Top/Health/Conditions_and_Diseases/Rare_Disorders/Erythromelalgia A non-profit organization dedicated to research and education regarding this painful disorder. Offers details about the disorder, the organization, FAQs and membership information. |
| Random 1 | Cirque du Soleil Tickets Las Vegas | http://www.cirque-du-soleil-tickets.com Cirque du Soleil Tickets Las Vegas | Top/Arts/Performing_Arts/Circus/Circuses/Cirque_Du_Soleil/Shows Specializes in info, reviews, photos and tickets for Cirque du Soleil resident shows in Las Vegas. |
| Random 4 | Guidelines for the Control of Pertussis in Australia | http://www.health.gov.au/pubhlth/strateg/communic/tech/pertus.htm Guidelines for the Control of Pertussis in Australia | Top/Health/Conditions_and_Diseases/Respiratory_Disorders/Whooping_Cough Synopsis of the communicable diseases intelligence technical report series number 1 endorsed by the Communicable Diseases Network of Australia and New Zealand. |
| Random 4 | THCME Medical Biochemistry Page: Fatty Acid Oxidation | http://web.indstate.edu/thcme/mwking/fatty-acid-oxidation.html THCME Medical Biochemistry Page: Fatty Acid Oxidation | Top/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. |
| Next 70 | Dust Mites in the Home | http://familydoctor.org/683.xml Dust Mites in the Home | Top/Health/Conditions_and_Diseases/Allergies Some helpful hints in ridding your house of dust mites. Information from the AAFP. |
| Previous 70 | Doctor's Doctor: Degos Disease | http://www.thedoctorsdoctor.com/diseases/degos_disease.htm Doctor's Doctor: Degos Disease | Top/Health/Conditions_and_Diseases/Rare_Disorders/Degos Synonyms, appearance and prognosis. |
| Next 170 | Symposium on Food Allergens | http://www.food-allergens.de/ Symposium on Food Allergens | Top/Health/Conditions_and_Diseases/Allergies/Food International data collection, reviews, journal searches and book lists for food allergies. |
| Previous 170 | The Vancouver Sleep and Breathing Centre | http://www.sleep-breathing.bc.ca/ The Vancouver Sleep and Breathing Centre | Top/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. |
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| Previous 270 | Narcolepsy | http://www.geocities.com/mhungs Narcolepsy | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Narcolepsy This site gives clinical, genetic and HLA information about this disorder. |
| Other resource N0 | Narcolepsy | http://www.sleepdisorderchannel.com/narcolepsy/ Narcolepsy | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Narcolepsy A look at this disorder by the Sleep Disorder Channel. |
| Other resource N1 | The Florida Narcolepsy Association | http://flnarcolepsy.org/ The Florida Narcolepsy Association | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Narcolepsy Support group for people with sleep disorders. |
| Other resource N2 | eMedicine Health - Narcolepsy | http://www.emedicinehealth.com/articles/42505-1.asp eMedicine Health - Narcolepsy | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Narcolepsy Consumer health resource center providing information on the causes, symptoms, and treatment. |
| Other resource N3 | Sleep, Dreams and Wakefulness | http://ura1195-6.univ-lyon1.fr/index_e.html Sleep, Dreams and Wakefulness | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Research One of the longest established sleep research laboratories. |
| Other resource N4 | Fordham University Sleep Research Lab | http://www.geocities.com/fordhamsleep/ Fordham University Sleep Research Lab | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Research Basic sleep research laboratory investigating mechanisms of homeostatic and circadian regulation of sleep (Dr. Levente Kapas). |
| Other resource N5 | Sleepstudy.org | http://www.sleepstudy.org Sleepstudy.org | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Research This site is dedicated to educating, aiding researchers in the sleep domain, clinicians and basic scientists. It contains listings of current research projects. |
| Other resource N6 | The Center For Sleep Research Siegel Lab | http://www.npi.ucla.edu/sleepresearch The Center For Sleep Research Siegel Lab | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Research Basic sleep research laboratory. |
| Other resource N7 | Sydney Sleep Research Group | http://www.sleepsydney.org/ Sydney Sleep Research Group | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Research The Sleep Research Group of the Woolcock Institute of Medical Research aims to develop, foster and promote Australia's world class research and clinical capability in the field of sleep medicine. |
| Other resource N8 | National Sleep Foundation | http://www.sleepfoundation.org/ National Sleep Foundation | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations Nonprofit organization supporting public education, sleep-related research, and advocacy related to sleep deprivation, sleep disorders, and excessive sleepiness. Extensive information on these topics. |
| Other resource N9 | Canadian Sleep Society | http://www.css.to Canadian Sleep Society | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations The Canadian Sleep Society (CSS) / Société Canadienne du Sommeil (SCS) is a professional association of clinicians, scientists and technologists formed in June 1986 to further the advancement and understanding of sleep and its disorders through scientific study and public awareness |
| Other resource N10 | Sleep On-Line | http://www.journalsleep.org Sleep On-Line | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations On-line web source for abstracts of articles published in SLEEP, the official journal of the American Sleep Disorders Association (www.asda.org) and the Sleep Research Society (bisleep.medsch.ucla.edu/SRS). |
| Other resource N11 | Australia & New Zealand and Australasian Sleep Association | http://www.thoracic.org.au/documents.html Australia & New Zealand and Australasian Sleep Association | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations Index page leading to "The Accreditation of Sleep Disorders Services" document. |
| Other resource N12 | British Sleep Society | http://www.british-sleep-society.org.uk British Sleep Society | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations The British Sleep Society was founded as a charity in 1989 to promote knowledge and research in sleep, its disorders and treatment. |
| Other resource N13 | BSSAA | http://www.britishsnoring.demon.co.uk/ BSSAA | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations The British Snoring and Sleep Apnoea Association aims to promote public awareness that habitual snoring and sleep apnoea are generally treatable complaints and that help is available. |
| Other resource N14 | International Sleep Medicine Association | http://www.1sleep.com International Sleep Medicine Association | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations New worldwide association for physicians, scientists, patients and corporations interested in sleep. |
| Other resource N15 | Sleep Research Society Home Page | http://www.sleepresearchsociety.org/site/ Sleep Research Society Home Page | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations The U.S. Sleep Research Society (SRS) fosters scientific investigations on all aspects of sleep and its disorders. It promotes training and education in sleep research and provides forums for the exchange of knowledge pertaining to sleep. |
| Other resource N16 | SomnoMed Australian Sleep Association | http://www.somnomed.com.au/ SomnoMed Australian Sleep Association | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations Professional Austrialian sleep organization focusing on obstructive sleep apnoea and snoring. Aims to promote public awareness about the medical and social ramifications of sleep disorders. |
| Other resource N17 | Sleep Paralysis and Related Experiences | http://watarts.uwaterloo.ca/~acheyne/S_P.html Sleep Paralysis and Related Experiences | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Sleep_Paralysis A comprehensive site dealing with sleep paralysis, hypnagogic and hypnopompic hallucinations. |
| Other resource N18 | Sleep Paralysis and Lucid Dreaming | http://www.geocities.com/jorgeconesa/Paralysis/sleepnew.html Sleep Paralysis and Lucid Dreaming | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Sleep_Paralysis A scientific and personal research and account of Sleep Paralysis and its connection to lucid dreaming, alien abduction phenomena and nightmares. List of symptoms and references. |
| Other resource N19 | Wemove - Restless Legs Syndrome | http://www.wemove.org/rls.html Wemove - Restless Legs Syndrome | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Restless_Legs_Syndrome Useful information site for patients and medical professionals hosted by We Move - an awareness for movement disorders site (funded by pharmaceutical companies). |
| Other resource N20 | Restless Legs Syndrome | http://www.ninds.nih.gov/health_and_medical/disorders/restless_doc.htm Restless Legs Syndrome | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Restless_Legs_Syndrome Information page compiled by NINDS, the National Institute of Neurological Disorders and Stroke. |
| Other resource N21 | Sleep Disorders Center - Restless Legs Syndrome | http://www.med.nyu.edu/sleep/rls.html Sleep Disorders Center - Restless Legs Syndrome | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Restless_Legs_Syndrome Described as those "creepy crawly" sensations in legs, sometimes described as feeling like "Pepsi Cola in the veins." Find a list of symptoms. |
| Other resource N22 | Greater San Antonio Restless Legs Syndrome Support Group | http://www.legsmove.org/ Greater San Antonio Restless Legs Syndrome Support Group | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Restless_Legs_Syndrome Designed to educate those suffering with RLS/PLMS so that they can be aware of the latest treatments and identify the symptoms so that they can get proper treatment. |
| Other resource N23 | Northside Hospital Sleep Medicine Institute | http://www.nshsleep.com/services.htm Northside Hospital Sleep Medicine Institute | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers A description of the sleep disorders treated here, including sleepwalking, night terrors, sleep related violence, sleep eating, gastroesophageal reflux and childhood sleep disorders. Atlanta,GA. |
| Other resource N24 | Silent Partners Sleep Clinic | http://www.silentpartners.org Silent Partners Sleep Clinic | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Located in uptown Toronto, Silent Partners Sleep Laboratory is a seven bed laboratory with state of the art equipment. We diagnose and treat many different kinds of sleep disorders including snoring, sleep apnea, insomnia, periodic leg movement and restless leg syndromes, narcolepsy and parasomnias. |
| Other resource N25 | Sleep Disorders Center at Newark Beth Israel | http://njsleephelp.com/ Sleep Disorders Center at Newark Beth Israel | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers The Sleep Disorders Center at Newark Beth Israel was set up in 1978 and has since diagnosed and treated more than 8,500 patients. |
| Other resource N26 | Sleep Laboratory University Of Marburg | http://www.uni-marburg.de/sleep/lab/welcome_.html Sleep Laboratory University Of Marburg | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Sleep Laboratory, University Of Marburg, established in 1981 conducts research and treats sleep disorders. |
| Other resource N27 | Bondi Junction, Centre for Snoring and Sleep Disorders | http://www.snoring.com.au Bondi Junction, Centre for Snoring and Sleep Disorders | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Information site for patients and medical professionals dealing with snoring and sleep related conditions. The Centre for Snoring and Sleep Disorders, Bondi Junction, Sydney, Australia. |
| Other resource N28 | C.N.P.P. | http://www.cnpp.org.mx/eng/ C.N.P.P. | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers The Neuro-psycho-pedagogic center, Mexico, is an interdisciplinary clinic established in 1978 includes a sleep disorders center and also specializes in neurology, psychology, and education. |
| Other resource N29 | Midwest Sleep Diagnostics | http://www.midwestsleep.com/ Midwest Sleep Diagnostics | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Information about the facility, the services provided, location and insurance. Located in St. Louis, Missouri. |
| Other resource N30 | Christ Hospital's Sleep Disorders Lab | http://www.christhospital.org/sleepdisorders/sleepdisorders.html Christ Hospital's Sleep Disorders Lab | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Christ Hospital's Sleep Disorders Lab |
| Other resource N31 | Cheshire Center for Sleep Studies, NH | http://www.cheshire-med.com/programs/sleep/intro.html Cheshire Center for Sleep Studies, NH | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers A cooperative effort between the Cheshire Medical Center and the Dartmouth Sleep Disorder to provide a facility offering evaluation and treatment of the full range of sleep disorders. |
| Other resource N32 | Sleep apnea, narcolepsy, hypersomnia and other sleep disorders (Columbus) | http://www.netexp.net/~flamenco/sleepresources.html Sleep apnea, narcolepsy, hypersomnia and other sleep disorders (Columbus) | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Sleep medicine resources for detection and control of sleep apnea, narcolepsy, hypersomnia, insomnia and sleep disorders. |
| Other resource N33 | The Children's Hospital Medical Center of Cincinnati Sleep Disorders Clinic | http://www.cincinnatichildrens.org/programs_services/391/ The Children's Hospital Medical Center of Cincinnati Sleep Disorders Clinic | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers The Cincinnati Children's Hospital Medical Center Sleep Disorders Clinic staff provides a multidisciplinary assessment and assistance with managing sleep problems. |
| Other resource N34 | SleepQuest: Treating Sleep Disorders - Obstructive Sleep Apnea | http://www.sleepquest.com SleepQuest: Treating Sleep Disorders - Obstructive Sleep Apnea | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers SleepQuest specializes in treating obstructive sleep apnea and other sleep disorders by providing innovative diagnostic and treatment services in the convenience of the patient's home. |
| Other resource N35 | HMS Diagnostics, Inc. | http://hmsdiagnostics.com HMS Diagnostics, Inc. | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Specialists in the diagnosis of sleep disorders. Located in the heart of the Texas Medical Center. Houston,TX |
| Other resource N36 | Wesley Medical Center's - Sleep Disorders Center | http://www.wesleymc.com/CustomPage.asp?guidCustomContentID={18DC58DD-40A2-11D4-A2E1-00508B62BE1F} Wesley Medical Center's - Sleep Disorders Center | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Basic information from this Wichita based sleep disorders center. |
| Other resource N37 | VCU Health Systems Sleep Disorders Center | http://www.vcu.edu/sleepwell VCU Health Systems Sleep Disorders Center | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Located in Richmond, Virginia. Information on apnea, narcolepsy, insomnia, RLS, and links to other sites. |
| Other resource N38 | Royal Brompton Hospital, London - Victoria Ward | http://www.rbh.nthames.nhs.uk/InternetSection/department/warddepartmentchapters.asp Royal Brompton Hospital, London - Victoria Ward | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Includes a research laboratory in sleep apnoea, and investigates breathing problems in people with neuromuscular disorders. |
| Other resource N39 | Sleep Disorders Center of SW Florida | http://www.mydoctor.com/martincohnmd/ Sleep Disorders Center of SW Florida | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Learn about this center and its diagnosis and treatment of sleep apnea, insomnia, narcolopsy, and other sleep disorders as well as clinical research. Includes health news and resources. |
| Other resource N40 | Sleep Medicine Associates of Texas, P.A. | http://www.sleepmed.com Sleep Medicine Associates of Texas, P.A. | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Sleep offices and laboratories in the North Texas area, based in Dallas and Plano. |
| Other resource N41 | Morningstar Sleep Medicine Associates, LLC. | http://www.virtualsleepclinic.com/ Morningstar Sleep Medicine Associates, LLC. | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Virtual sleep disorders clinic. Find information about the services, the doctors, news and a FAQs. |
| Other resource N42 | Central Texas Chest Clinic | http://www.startsleeping.com/ Central Texas Chest Clinic | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Explanations of common sleep disorders and their treatment options. |
| Other resource N43 | Bay Sleep Clinic | http://www.baysleep.com Bay Sleep Clinic | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Dedicated to helping to achieve a good night’s sleep. Serves in three locations in the Bay Area: San Francisco, Los Gatos and Menlo Park. |
| Other resource N44 | Trinitas Hospital Sleep Disorders Center | http://www.njsleepdisorderscenter.com Trinitas Hospital Sleep Disorders Center | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Hospital-based program to diagnose and treat snoring, sleep apnea, insomnia, restless leg syndrome, narcolepsy and many other sleep disorders. |
| Other resource N45 | Sierra Sleep Technologies | http://www.sierrasleep.com Sierra Sleep Technologies | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Specializing in the treatment and diagnosis of sleep disorders. Research and clinical studies performed in Las Vegas. |
| Other resource N46 | The Regional Center for Sleep Medicine | http://www.trcsm.com The Regional Center for Sleep Medicine | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers A member of the Sleep Network, a national consortium of diagnostic and treatment sleep disorders centers, specializing in sleep apnea. |
| Other resource N47 | Dreamland and Somnambulism | http://blavatsky.net/blavatsky/arts/DreamlandAndSomnambulism.htm Dreamland and Somnambulism | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Sleepwalking Includes a brief history and synopsis. |
| Other resource N48 | Diary of a Somnambulist | http://www.sleepwalkdiary.com Diary of a Somnambulist | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Sleepwalking This is a real-life diary of my sleepwalking adventures updated as episodes occur. Sometimes funny, sometimes creepy -- always true! |
| Other resource N49 | American Association of Medical Chronobiology and Chronotherapeutics | http://www.aamcc.org American Association of Medical Chronobiology and Chronotherapeutics | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Biological_Rhythms Details about the AAMCC who provides an organizational framework for scientists and health care professionals interested in the medical application of chronobiology and chronotherapeutics. |
| Other resource N50 | Center for Biological Timing Home Page | http://www.cbt.virginia.edu/index.html Center for Biological Timing Home Page | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Biological_Rhythms The National Science Foundation Center for Biological Timing. Tutorials and original papers on biological timing. |
| Other resource N51 | Circadian Sleep Disorders Association | http://www.circadiandisorders.org/ Circadian Sleep Disorders Association | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Biological_Rhythms Support and providing information to those affected by circadian sleep disorders such as Delayed Sleep Phase Syndrome. Includes links, FAQs, message board and a mailing list. |
| Other resource N52 | Delayed Sleep Phase Syndrome | http://www.geocities.com/delayed_sleep Delayed Sleep Phase Syndrome | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Biological_Rhythms Comprehensive site with symptoms, causes, treatments, and links to further information on DSPS and circadian rhythms. |
| Other resource N53 | Children Who Sleep With Light on May Damage Their Sight | http://www.bmj.com/cgi/content/full/318/7195/1369/a Children Who Sleep With Light on May Damage Their Sight | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Life_Cycle_Sleep_Disorders News item from British Medical Journal (1999). |
| Other resource N54 | BabyCenter - Sleep During Pregnancy | http://www.babycenter.com/refcap/7512.html BabyCenter - Sleep During Pregnancy | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Life_Cycle_Sleep_Disorders Describes how pregnancy will affect sleep and what to do about it (also has useful links). |
| Other resource N55 | Kleine-Levin Syndrome | http://www.kleinelevin.com/ Kleine-Levin Syndrome | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Disturbed Provides information and support for those people who have KLS or who have a loved one with KLS and to provide them the opportunity to get in touch with other KLS persons. |
| Other resource N56 | Cherubs | http://www.cherubs-cdh.org Cherubs | Top/Health/Conditions_and_Diseases/Rare_Disorders A non-profit support group for the families and medical care providers of children and adults born with Congenital Diaphragmatic Hernia. |
| Other resource N57 | Human Growth Foundation | http://www.hgfound.org/ Human Growth Foundation | Top/Health/Conditions_and_Diseases/Rare_Disorders Information about growth-related disorders through education, research, and advocacy. Member driven organization. |
| Other resource N58 | Tetrahydrobiopterin | http://www.bh4.org Tetrahydrobiopterin | Top/Health/Conditions_and_Diseases/Rare_Disorders Information on structure, biosynthesis and pathophysiology of BH4 and tetrahydrobiopterin deficiency. |
| Other resource N59 | Lymphangiomatosis and Gorham's Vanishing Bone Disease | http://www.gorhams.dk Lymphangiomatosis and Gorham's Vanishing Bone Disease | Top/Health/Conditions_and_Diseases/Rare_Disorders Provides general information and a personal account, including pictures and X-rays. Also offers patient contact and an email discussion group. |
| Other resource N60 | Information Centre for Rare Diseases and Orphan Drugs | http://www.raredis.org Information Centre for Rare Diseases and Orphan Drugs | Top/Health/Conditions_and_Diseases/Rare_Disorders Offers an Internet portal. Includes news, forums, rare disease and orphan drug info and registration forms |
| Other resource N61 | Hutchinson-Gilford Progeria Syndrome (HGPS) Resource Page | http://www.laze.net/progeria/index.html Hutchinson-Gilford Progeria Syndrome (HGPS) Resource Page | Top/Health/Conditions_and_Diseases/Rare_Disorders/Progeria Provides an overview of the disease as well as links to resources. |
| Other resource N62 | Online Mendelian Inheritance in Man - Progeria | http://www3.ncbi.nlm.nih.gov/htbin-post/Omim/dispmim?176670 Online Mendelian Inheritance in Man - Progeria | Top/Health/Conditions_and_Diseases/Rare_Disorders/Progeria Progeria medical database resource for textual information, pictures, and reference information. |
| Other resource N63 | NORD: Progeria, Hutchinson Gilford | http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Progeria%2C%20Hutchinson%20Gilford NORD: Progeria, Hutchinson Gilford | Top/Health/Conditions_and_Diseases/Rare_Disorders/Progeria Outlines the symptoms and lists related organizations. |
| Other resource N64 | Doctor's Doctor: Degos Disease | http://www.thedoctorsdoctor.com/diseases/degos_disease.htm Doctor's Doctor: Degos Disease | Top/Health/Conditions_and_Diseases/Rare_Disorders/Degos Synonyms, appearance and prognosis. |
| Other resource N65 | eMedicine - Degos Disease : | http://www.emedicine.com/derm/topic931.htm eMedicine - Degos Disease : | Top/Health/Conditions_and_Diseases/Rare_Disorders/Degos Article by Noah S Scheinfeld, MD, JD, FAAD. Background, pathophysiology, causes, and treatments. |
| Other resource N66 | VATER Association | http://www3.ncbi.nlm.nih.gov:80/htbin-post/Omim/dispmim?192350 VATER Association | Top/Health/Conditions_and_Diseases/Rare_Disorders/VATER_Syndrome Description and clinical synopsis, plus links to articles and research abstracts. |
| Other resource N67 | Wegener's Granulomatosis Info | http://www.weareb.org/WG/index.html Wegener's Granulomatosis Info | Top/Health/Conditions_and_Diseases/Rare_Disorders/Wegener's_Granulomatosis Subscription information and archives for a Wegener's mailing list, FAQ, articles and links for further information. |
| Other resource N68 | Wegener's Granulomatosis, NIAID Fact Sheet | http://www.niaid.nih.gov/factsheets/wegeners.htm Wegener's Granulomatosis, NIAID Fact Sheet | Top/Health/Conditions_and_Diseases/Rare_Disorders/Wegener's_Granulomatosis Fact sheet from the US National Institute of Allergies and Infectious Diseases. |
| Other resource N69 | Wegener's Granulomatosis | http://www.nlm.nih.gov/medlineplus/ency/article/000135.htm Wegener's Granulomatosis | Top/Health/Conditions_and_Diseases/Rare_Disorders/Wegener's_Granulomatosis Brief overview including definition, causes and risk factors, from adam.com. |
| Other resource N70 | Wegener's Granulomatosis Association | http://www.wgassociation.org Wegener's Granulomatosis Association | Top/Health/Conditions_and_Diseases/Rare_Disorders/Wegener's_Granulomatosis A non-profit organization dedicated to providing emotional and informational support to patients and their families with Wegener's granulomatosis. |
| Other resource N71 | Cystinosis Central | http://medicine.ucsd.edu/cystinosis/INDEX.htm Cystinosis Central | Top/Health/Conditions_and_Diseases/Rare_Disorders/Cystinosis Information about this disorder, conferences, data for physicians, updates and links. |
| Other resource N72 | NINDS: Aicardi Syndrome | http://www.ninds.nih.gov/health_and_medical/disorders/aicardi.htm NINDS: Aicardi Syndrome | Top/Health/Conditions_and_Diseases/Rare_Disorders/Aicardi_Syndrome Information sheet compiled by National Institute of Neurological Disorders and Stroke with general information, and a list of organisations. |
| Other resource N73 | National Library of Medicine: Aicardi syndrome | http://www.nlm.nih.gov/mesh/jablonski/syndromes/syndrome015.html National Library of Medicine: Aicardi syndrome | Top/Health/Conditions_and_Diseases/Rare_Disorders/Aicardi_Syndrome provides a summary, list of synonyms, and the major features. |
| Other resource N74 | Aicardi Syndrome Foundation | http://www.aicardisyndrome.org/ Aicardi Syndrome Foundation | Top/Health/Conditions_and_Diseases/Rare_Disorders/Aicardi_Syndrome Information about the disease, a medical survey, where to get help, publications and a chat room for support. |
| Other resource N75 | Cleidocranial Dysplasia | http://cleidocranial_dysplasia.homestead.com/page1.html Cleidocranial Dysplasia | Top/Health/Conditions_and_Diseases/Rare_Disorders/Cleidocranial_Dysplasia Information about this rare genetic disorder, studies and a chat room. |
| Other resource N76 | National Library of Medicine: cerebrocostomandibular (CCM) syndrome (CCMS) | http://www.nlm.nih.gov/mesh/jablonski/syndromes/syndrome098.html National Library of Medicine: cerebrocostomandibular (CCM) syndrome (CCMS) | Top/Health/Conditions_and_Diseases/Rare_Disorders/Cerebrocostomandibular_Syndrome A list of synonyms, summary and major features. |
| Other resource N77 | Electronic Journal of Hand Surgery | http://www.leeds.ac.uk/handsurgery/EJHS/overgr.htm Electronic Journal of Hand Surgery | Top/Health/Conditions_and_Diseases/Rare_Disorders/Melorheostosis Short case study with photo and x-ray. |
| Other resource N78 | E-Medicine: Moyamoya Disease | http://www.emedicine.com/neuro/topic616.htm E-Medicine: Moyamoya Disease | Top/Health/Conditions_and_Diseases/Rare_Disorders/Moyamoya Introduction, clinical features, differentials, work up, treatments, medication and follow up. |
| Other resource N79 | NORD: Moyamoya Disease | http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Moyamoya%20Syndrome NORD: Moyamoya Disease | Top/Health/Conditions_and_Diseases/Rare_Disorders/Moyamoya Sample report, plus links to organisations. [Fee required for full report] |
| Other resource N80 | Contact a Family: Pierre Robin Syndrome | http://www.cafamily.org.uk/Direct/p24.html Contact a Family: Pierre Robin Syndrome | Top/Health/Conditions_and_Diseases/Rare_Disorders/Pierre_Robin_Syndrome Main features of the condition and possible causes. |