site URL - http://www.barthsyndrome.org
Site description: Promotes knowledge about this disease among families, physicians and scientists, serving as a focal point for data and research for scientists. The group offers support to families learning to cope with the disorder.
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| LINK | URI & TITLE | DESCRIPTION & TOPIC | |
| Previous 10 | Children's PKU Network | http://www.pkunetwork.org/ Children's PKU Network | Top/Health/Conditions_and_Diseases/Rare_Disorders/Phenylketonuria Organisation offering education and direct assistance. Includes details of projects, plus links to food suppliers. |
| Previous | The CaF Directory | http://www.cafamily.org.uk/Direct/r36.html The CaF Directory | Top/Health/Conditions_and_Diseases/Rare_Disorders/Rubinstein-Taybi_Syndrome A description of rubinstein taybi syndrome, its inheritance pattern, psychological and behavoural characteristics and a support group for those living in the United Kingdom. |
| Random 1 | Atlanta Bioscience | http://www.atlantabioscience.com/ Atlanta Bioscience | Top/Business/Biotechnology_and_Pharmaceuticals News, events, and information about metro Atlanta biotechnology, pharmaceutical, medical device, and related bioscience industries. |
| Random 2 | Unipen and Nafcil | http://www.rxlist.com/cgi/generic3/nafcillin.htm Unipen and Nafcil | Top/Health/Pharmacy/Drugs_and_Medications/N/Nafcillin Full prescribing information from RxList. |
| Random 3 | Med-Consultant | http://med-consultant.com/ Med-Consultant | Top/Society/Law/Services/Medical/Legal_Nurse_Consultants Offers complete case reviews, medical legal consulting, research and location of expert witnesses. Includes mission, list of services and contact information in Avilla, Indiana. |
| Random 4 | Robinson Healthcare, Ltd | http://www.robinsoncare.com/ Robinson Healthcare, Ltd | Top/Business/Healthcare/Products_and_Services/Hygiene_Disposables/Manufactured_Products/Tissues_and_Wipes UK. Manufacturers of name brand healthcare and hygiene disposable products. Wet and dry wipes for baby care, personal hygiene, medical and household cleaning purposes. Also, cotton wool products. |
| Random 5 | Cristina's Anime Sanctuary | http://www.geocities.com/nuri_tintin/ Cristina's Anime Sanctuary | Top/Arts/Animation/Anime/Fandom/C Fan art, fan fiction, MP3 files, and image gallery. |
| Next | NINDS - Barth Syndrome Information | http://www.ninds.nih.gov/health_and_medical/disorders/barth.htm NINDS - Barth Syndrome Information | Top/Health/Conditions_and_Diseases/Rare_Disorders/Barth_Syndrome Information sheet compiled by the National Institute of Neurological Disorders and Stroke. |
| Next 10 | Erythromelalgia (EM) | http://groups.yahoo.com/group/EM Erythromelalgia (EM) | Top/Health/Conditions_and_Diseases/Rare_Disorders/Erythromelalgia Email group to discuss treatments and the affects of the condition. |
| Random 1 | Java St. Andrew Society | http://www.javastandrewsociety.com Java St. Andrew Society | Top/Arts/Performing_Arts/Dance/Folk_Dancing/Celtic/Scottish/Branches_of_the_Royal_Scottish_Country_Dance_Society/Asia Malaysian society, offering events calendar, dance instructions and a news board. Affiliate of the RSCDS. |
| Random 4 | Arredamento Gpiazza | http://www.gpiazza.it Arredamento Gpiazza | Top/World/Italiano/Regionale/Europa/Italia/Friuli-Venezia_Giulia/Provincia_di_Udine/Località/Udine/Affari_e_Economia Soluzioni per l'arredamento di case, uffici, comunità, studi medici, ristorazione e complementi d'arredo. |
| Random 4 | MC Medical Clinic - Melchor M. Collantes, M.D. | http://www.kphi.org/?drcollantes MC Medical Clinic - Melchor M. Collantes, M.D. | Top/Regional/North_America/United_States/California/Counties/Los_Angeles/Health Clinic services are described in English text and Spanish audio. Offices in Norwalk and Los Angeles. |
| Next 70 | eMedicine Health - Allergies | http://www.emedicinehealth.com/articles/8633-1.asp eMedicine Health - Allergies | Top/Health/Conditions_and_Diseases/Allergies Consumer health resource center providing an overview, the causes, symptoms and treatment. |
| Previous 70 | Progeria Project Foundation | http://www.progeriaproject.com/ Progeria Project Foundation | Top/Health/Conditions_and_Diseases/Rare_Disorders/Progeria A group concerned about the well-being and quality of life for Progeria children and their families. |
| Next 170 | Food Allergies and Allergens | http://www.lactose.co.uk/foodallergies/ Food Allergies and Allergens | Top/Health/Conditions_and_Diseases/Allergies/Food A guide, including lists of food colors, additives and chemicals that also trigger hyper activity in children. Causes, symptoms, treatments, allergy medicine, forums, recipes, links, books and advise. |
| Previous 170 | Jefferson Health System -- Sleep Disorders | http://www.jeffersonhealth.org/diseases/sleep/index.htm Jefferson Health System -- Sleep Disorders | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Sleep Center for the Philadelphia Region with generally precise and concise information on sleep disorders. |
| Next 270 | |||
| Previous 270 | Narcolepsy Association UK | http://www.narcolepsy.org.uk Narcolepsy Association UK | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Narcolepsy The homepage for Narcolepsy Association UK - UKAN a registered charity |
| Other resource N0 | Our Experiences with Narcolepsy | http://www.cataplexic.com/narcolepsy2.html Our Experiences with Narcolepsy | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Narcolepsy Offers stories about experiences with symptoms, doctors, medicines and everyday life. |
| Other resource N1 | Narcolepsy in Our Family | http://www.thebestisyet.net/cgi-bin/cgiwrap/pando19/start.cgi/viewfrom11.htm Narcolepsy in Our Family | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Narcolepsy Virginia Ramage Smith describes the experience of narcolepsy in a family member. |
| Other resource N2 | Sleepy Online | http://www.geocities.com/sleepyonlineuk/ Sleepy Online | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Narcolepsy Information about narcolepsy-related issues. Includes personal stories and news about the disorder. |
| Other resource N3 | Living with Narcolepsy | http://groups.msn.com/LivingwithNarcolepsy/ Living with Narcolepsy | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Narcolepsy A place for people to help each other with chat, message board & group news available. |
| Other resource N4 | Sleep Research: Zurich | http://www.unizh.ch/phar/sleep/ Sleep Research: Zurich | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Research Some of the most influential ideas for decades emerged from the Section of Psychopharmacology and Sleep Research, Zurich. Arguably, where the biological clock met sleep. |
| Other resource N5 | Sleep Research Laboratory | http://www.lboro.ac.uk/departments/hu/groups/sleep/ Sleep Research Laboratory | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Research Sleep Laboratory at Loughborough University, England. |
| Other resource N6 | 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 N7 | Clinilabs | http://www.clinilabs.com Clinilabs | Top/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 N8 | WFSRS-HOME | http://www.wfsrs.org/homepage.html WFSRS-HOME | Top/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 N9 | The American Sleep Apnea Association | http://www.sleepapnea.org/ The American Sleep Apnea Association | Top/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 N10 | The School of Sleep Medicine | http://www.sleepedu.net/ssm.shtml The School of Sleep Medicine | Top/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 N11 | WHO: Mental disorders in Primary Health Care | http://www.who.int/msa/mnh/ems/primacare/edukit/index.htm WHO: Mental disorders in Primary Health Care | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations World Health Organisation education packs on mental disorders in primary care (including sleep disorders). |
| Other resource N12 | Journal of Sleep Research | http://www.blacksci.co.uk/~cgilib/jnlpage.bin?Journal=jsr&File=jsr&Page=aims Journal of Sleep Research | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations Official Journal of the European Sleep Research Society |
| Other resource N13 | National Center on Sleep Disorders Research | http://rover.nhlbi.nih.gov/about/ncsdr/ National Center on Sleep Disorders Research | Top/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 N14 | American Sleep Research Institute | http://www.asri.net/ American Sleep Research Institute | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Organizations Conducts tests of mattresses and other sleep products. |
| Other resource N15 | Sleep/Wake Disorders Canada | http://www.hc-sc.gc.ca/hppb/healthcare/pubs/selfcare/8en.htm Sleep/Wake Disorders Canada | Top/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 N16 | 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 N17 | 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 N18 | The Periodic Paralysis Resource Center | http://www.periodicparalysis.org/PPA/ The Periodic Paralysis Resource Center | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Sleep_Paralysis This site provides information on sleep paralysis as well as daytime paralysis. |
| Other resource N19 | Restless Leg Syndrome Organization | http://www.rls.org Restless Leg Syndrome Organization | Top/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 N20 | Ohio Sleep Medicine Institute | http://www.sleepohio.com/ Ohio Sleep Medicine Institute | Top/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 N21 | Molly z.'s Sleep Disorders - About PLMD | http://www.trishs.net/plmd/index.html Molly z.'s Sleep Disorders - About PLMD | Top/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 N22 | 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 N23 | Scottish National Sleep Centre | http://www.show.scot.nhs.uk/sleep/index.htm Scottish National Sleep Centre | Top/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 N24 | Providence Sleep Disorders Center | http://www.providence.org/sleep/ Providence Sleep Disorders Center | Top/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 N25 | N2 Sleep | http://www.n2sleep.com/ N2 Sleep | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Providing educational and consultative services for people in the field of sleep medicine. |
| Other resource N26 | Sleep Disorders Center | http://www.sleepscene.com/ Sleep Disorders Center | Top/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 N27 | Midwest Sleep and Neurodiagnostic Institute | http://www.mwsleep.com/ Midwest Sleep and Neurodiagnostic Institute | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Information and education on various sleep disorders such as sleep apnea, Narcolepsy and insomnia. |
| Other resource N28 | Synapse Media - Sleep Medicine and Polysomnography | http://www.synapsemedia.com Synapse Media - Sleep Medicine and Polysomnography | Top/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 N29 | The Sleep Disorder Clinic | http://www.snoring-clinic.co.uk The Sleep Disorder Clinic | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Information about the facility, the problems, causes, laser treatment, research and contact details. |
| Other resource N30 | Sleepcare Diagnostics Home Page | http://www.snorenomore.com/ Sleepcare Diagnostics Home Page | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Sleep Disorders, Cincinnati, Ohio. |
| Other resource N31 | 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. |
| Other resource N32 | North Bay Sleep Medicine Institute | http://www.nbsmi.com North Bay Sleep Medicine Institute | Top/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 N33 | 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 N34 | Ohio Sleep Medicine Institute | http://www.sleepohio.com Ohio Sleep Medicine Institute | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Sleep disorders clinic with both treatment and research facilities. |
| Other resource N35 | Sleep Services of America | http://www.sleepservices.net Sleep Services of America | Top/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 N36 | Kathryn Severyns Dement Sleep Disorders Center at St. Mary Medical Center | http://www.smmc.com/sleep/ Kathryn Severyns Dement Sleep Disorders Center at St. Mary Medical Center | Top/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 N37 | The Technion-Sleep Laboratory and Sleep Disorders Center | http://www.sleeplab.co.il/ The Technion-Sleep Laboratory and Sleep Disorders Center | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers This research laboratory located in Israel started before there was a field of sleep medicine. |
| Other resource N38 | The Torrance Center for Sleep | http://tc4s.com/indexa.htm The Torrance Center for Sleep | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Practice based in Torrance, California. |
| Other resource N39 | The London Sleep Centre | http://www.londonsleepcentre.com The London Sleep Centre | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Diagnosis and treatment of sleep disorders including insomnia, and sleep apnoea. Offers scientific diagnostic assessments. |
| Other resource N40 | 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 N41 | UCSF Sleep Disorder Center | http://www.ucsfhealth.org/adult/medical_services/neuro/sleep_disorders/index.html UCSF Sleep Disorder Center | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Information on the signs and symptoms, diagnosis and treatment of sleep disorders. |
| Other resource N42 | Sleep Well Clinic | http://www.sleepwellclinic.co.nz Sleep Well Clinic | Top/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 N43 | Alabama School of Sleep Medicine and Technology | http://www.alsleep.com Alabama School of Sleep Medicine and Technology | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Alabama sleep school providing sleep medicine, sleep disorders and polysomnography training and education. |
| Other resource N44 | Mid-West Center For Sleep Disorders | http://www.mwcsd.com Mid-West Center For Sleep Disorders | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Utilizes the latest technology for diagnosing and treating sleep/wake disorders. Located in Brighton, Michigan. |
| Other resource N45 | REM Sleep Diagnostics | http://www.remsleepdiagnostics.com REM Sleep Diagnostics | Top/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 N46 | St. John's Medical Plaza Sleep Disorder Center | http://www.stjohnsleep.com/ St. John's Medical Plaza Sleep Disorder Center | Top/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 N47 | Sleep Medicine Northwest | http://www.sleepnw.com Sleep Medicine Northwest | Top/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 N48 | 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 N49 | American Society for Gravitational and Space Biology -- Desert Beetle Circadian Rhythm Study Begins on Mir | http://asgsb.indstate.edu/newsletter/v13_2/beetle.html American Society for Gravitational and Space Biology -- Desert Beetle Circadian Rhythm Study Begins on Mir | Top/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 N50 | Dawn Simulators | http://www.pi-square.com/ Dawn Simulators | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Biological_Rhythms A look at a stimulating apparatus to help with Seasonal Affective Disorder. |
| Other resource N51 | Mental Health Net - Circadian Rhythm Sleep Disorder Symptoms | http://mentalhelp.net/disorders/sx92.htm Mental Health Net - Circadian Rhythm Sleep Disorder Symptoms | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Biological_Rhythms General symptoms of circadian rhythm sleep disorder. |
| Other resource N52 | Scientists Find Eye Pigment Controls Circadian Rhythm | http://www.eurekalert.org/pub_releases/1998-11/UoNC-DECN-191198.php Scientists Find Eye Pigment Controls Circadian Rhythm | Top/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 N53 | The Treatment of Sleep Disorders in Older People | http://text.nlm.nih.gov/nih/cdc/www/78txt.html The Treatment of Sleep Disorders in Older People | Top/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 N54 | Comfortable Sleep Position during Pregnancy | http://www.parenthoodweb.com/articles/phw266.htm Comfortable Sleep Position during Pregnancy | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Life_Cycle_Sleep_Disorders Parenthood article. |
| Other resource N55 | Epilepsy & sleep disorders | http://dem0nmac.mgh.harvard.edu/neurowebforum/EpilepsyArticles/epilepsysleepdisorders.html Epilepsy & sleep disorders | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Disturbed Article from the neurowebforum |
| Other resource N56 | NINDS Kleine-Levin Syndrome Information Page | http://www.ninds.nih.gov/disorders/kleine_levin/kleine_levin.htm NINDS Kleine-Levin Syndrome Information Page | Top/Health/Conditions_and_Diseases/Sleep_Disorders/Disturbed Offers an information sheet compiled by the National Institute of Neurological Disorders and Stroke (NINDS). |
| Other resource N57 | International Rare Disease Support Network | http://www.raredisorders.com International Rare Disease Support Network | Top/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 N58 | Nomid /Cinca | http://pweb.netcom.com/~jkbarton/nomid/Html/nomid_home_page.htm Nomid /Cinca | Top/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 N59 | Kindler Syndrome | http://digilander.libero.it/camdic/KINDLER.html Kindler Syndrome | Top/Health/Conditions_and_Diseases/Rare_Disorders An article and case study of this rare disease. Includes links. |
| Other resource N60 | Mascot McCune Allbright Syndrome Communication Online Town | http://www.mascot.altervista.org Mascot McCune Allbright Syndrome Communication Online Town | Top/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 N61 | eMedicine: Bullous pemphigoid | http://www.emedicine.com/derm/topic64.htm eMedicine: Bullous pemphigoid | Top/Health/Conditions_and_Diseases/Rare_Disorders/Pemphigoid In depth article covering clinical information, diagnosis, and treatment. Includes prescribing information. |
| Other resource N62 | 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 N63 | Progeria Family Circle | http://www.progeriafamilycircle.de/ Progeria Family Circle | Top/Health/Conditions_and_Diseases/Rare_Disorders/Progeria Overview of the rare disorder, symptoms, and experiences of children with Progeria and their families. |
| Other resource N64 | Progeria Project Foundation | http://www.progeriaproject.com/ Progeria Project Foundation | Top/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 N65 | Degos Patients' Support Network | http://www.degosdisease.com Degos Patients' Support Network | Top/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 N66 | A Problem Shared | http://www.tofs.org.uk A Problem Shared | Top/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 N67 | Zoe Lambert | http://www.zoelambert.com Zoe Lambert | Top/Health/Conditions_and_Diseases/Rare_Disorders/VATER_Syndrome Personal account of this condition, and surgery to receive titanium rib implants. |
| Other resource N68 | Wegener's Granulomatosis Site | http://www.angelfire.com/ga/wegeners/ Wegener's Granulomatosis Site | Top/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 N69 | Wegener's Granulomatosis | http://www.geocities.com/wbh7777/wegen.html Wegener's Granulomatosis | Top/Health/Conditions_and_Diseases/Rare_Disorders/Wegener's_Granulomatosis Provides a chat, forum, and links to health pages. |
| Other resource N70 | WegenersNet | http://www.wegenersnet.org WegenersNet | Top/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 N71 | Visual Agnosia | http://www.stir.ac.uk/departments/humansciences/psychology/Postgrads/pgm1/Net_Presentation/tsld017.htm Visual Agnosia | Top/Health/Conditions_and_Diseases/Rare_Disorders/Agnosia List of features for this disorder. |
| Other resource N72 | Cystinosis Foundation | http://www.cystinosisfoundation.org Cystinosis Foundation | Top/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 N73 | Contact a Family: Aicardi Syndrome | http://www.cafamily.org.uk/Direct/a28.html Contact a Family: Aicardi Syndrome | Top/Health/Conditions_and_Diseases/Rare_Disorders/Aicardi_Syndrome General information, including associated conditions, plus inheritance patterns. |
| Other resource N74 | Medline Plus: Aicardi Syndrome | http://www.nlm.nih.gov/medlineplus/ency/article/001664.htm Medline Plus: Aicardi Syndrome | Top/Health/Conditions_and_Diseases/Rare_Disorders/Aicardi_Syndrome Definition, symptoms, signs and treatments. Includes support group information plus an illustration. |
| Other resource N75 | 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 N76 | MedicineNet.com: Cleidocranial Dysplasia | http://www.medicinenet.com/Script/Main/Art.asp?li=MNI&ArticleKey=6549 MedicineNet.com: Cleidocranial Dysplasia | Top/Health/Conditions_and_Diseases/Rare_Disorders/Cleidocranial_Dysplasia Basic information. |
| Other resource N77 | Melorheostosis | http://www.melorheostosis.com Melorheostosis | Top/Health/Conditions_and_Diseases/Rare_Disorders/Melorheostosis Personal histories and a message board, alongside links to research. |
| Other resource N78 | Moyamoya Disease | http://chorus.rad.mcw.edu/doc/01076.html Moyamoya Disease | Top/Health/Conditions_and_Diseases/Rare_Disorders/Moyamoya Definition, clinical symptoms and radiographic finding. |
| Other resource N79 | Moyamoya Disease | http://www.moyamoya.com Moyamoya Disease | Top/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 N80 | Pierre Robin Network | http://www.pierrerobin.org Pierre Robin Network | Top/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. |