PKU-Info.org

site URL - http://www.pku-info.org

Site description: Provides general information, plus links to organisations, suppliers and mailing lists. Also includes a forum. [English and German]




Topic: Top/Health/Conditions_and_Diseases/Rare_Disorders/Phenylketonuria

LINKURI & TITLEDESCRIPTION & TOPIC
Previous 10Pemphigushttp://www.pemphigus.com PemphigusTop/Health/Conditions_and_Diseases/Rare_Disorders/Pemphigus Information on the types and treatments.
PreviousMedline Plus: Phenylketonuriahttp://www.nlm.nih.gov/medlineplus/ency/article/001166.htm Medline Plus: PhenylketonuriaTop/Health/Conditions_and_Diseases/Rare_Disorders/Phenylketonuria Definition, causes, symptoms and treatment.
Random 1John Lilly, Ketamine and the Entities from ECCOhttp://www.conspiracyarchive.com/UFOs/Gorightly.htm John Lilly, Ketamine and the Entities from ECCOTop/Health/Pharmacy/Drugs_and_Medications/K/Ketamine/Research Article by Adam Gorightly, detailing the experiment attempting to use Ketamine to alleviate the pain of migraines, and what they discovered the effects to be.
Random 2Malashock Dance&Companyhttp://www.malashockdance.org/ Malashock Dance&CompanyTop/Arts/Performing_Arts/Dance/Modern/Companies/United_States/Western A Modern/Contemporary dance company lead by John Malashock. (California, USA)
Random 3Amsurg Corp.http://www.AmSurg.com/ Amsurg Corp.Top/Business/Healthcare/Healthcare_Management Acquires, develops and operates practice-based ambulatory surgery centers. (Nasdaq: AMSGA)
Random 4House Ways and Means Green Book: Medicarehttp://www.policyalmanac.org/health/archive/medicare_greenbook2000.shtml House Ways and Means Green Book: MedicareTop/Society/Issues/Health/Health_Policy/Medicare Background on Medicare eligibility, benefits, financing, Medicare+Choice, and related legislative issues.
Random 5Eastbourne Clinic of Natural Medicinehttp://www.eastbournenaturalhealth.co.uk/ Eastbourne Clinic of Natural MedicineTop/Regional/Europe/United_Kingdom/England/East_Sussex/Eastbourne/Health Describes the treatments available and their practitioners with prices and a location map.
NextTuxes for Tiahttp://www.tuxesfortia.com Tuxes for TiaTop/Health/Conditions_and_Diseases/Rare_Disorders/Phenylketonuria A fund raising event for PKU research on behalf of the Piziali Family Foundation for PKU. Learn about phenylketonuria.
Next 10Institute of Child Health: Jacobsen Syndromehttp://www.ich.ucl.ac.uk/units/mhu/fws/frames/jsoframe.htm Institute of Child Health: Jacobsen SyndromeTop/Health/Conditions_and_Diseases/Rare_Disorders/Jacobsen_Syndrome Clinical synopsis, plus research summaries.
Random 1Baltimore Jugglers Associationhttp://www.baltjugglers.com/ Baltimore Jugglers AssociationTop/Arts/Performing_Arts/Circus/Juggling/Organizations/Clubs Group of casual and professional jugglers with weekly meetings.
Random 4National Committee to Preserve Social Security and Medicarehttp://www.ncpssm.org/ National Committee to Preserve Social Security and MedicareTop/Society/People/Seniors/Benefits NCPSSM provides advocacy and information campaigns for these landmark federal programs.
Random 4Emlin Cosmeticshttp://www.emlin.com/ Emlin CosmeticsTop/Shopping/Health/Beauty/Cosmetics Emlin, Ednae and Amenities products including fragrances, makeup, bath and body, and skin care.
Next 70Allergy.comhttp://www.allergy.com/ Allergy.comTop/Health/Conditions_and_Diseases/Allergies Provides information about allergies. Find out the difference between allergy symptoms and a cold, or how to reduce allergens like pollen, mold, and dust mites. Presented by Aventis Pharmaceuticals Inc.
Previous 70Progeria 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.
Next 170AllergicChild.comhttp://www.allergicchild.com AllergicChild.comTop/Health/Conditions_and_Diseases/Allergies/Food Help for parents of children with severe peanuts, tree nuts, milk, eggs, soy, pet and infant allergies.
Previous 170Registered Sleepershttp://www.registeredsleepers.com/ Registered SleepersTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers A service that helps facilities set up, equip and support sleep disordered patients.
Next 270
Previous 270Narcolepsy Research Projecthttp://www.nursing.upenn.edu/Narcolepsy/ Narcolepsy Research ProjectTop/Health/Conditions_and_Diseases/Sleep_Disorders/Narcolepsy Flyer for research project looking for narcoleptic volunteers.
Other resource N0 Narcolepsyhttp://www.ninds.nih.gov/health_and_medical/disorders/narcolep_doc.htm NarcolepsyTop/Health/Conditions_and_Diseases/Sleep_Disorders/Narcolepsy Information sheet compiled by NINDS, the National Institute of Neurological Disorders and Stroke.
Other resource N1 Narcolepsy: a psychiatrist's perspectivehttp://www.gta.igs.net/~ecahoon Narcolepsy: a psychiatrist's perspectiveTop/Health/Conditions_and_Diseases/Sleep_Disorders/Narcolepsy A personal view from a retired psychiatrist on narcolepsy and related conditions.
Other resource N2 Our Experiences with Narcolepsyhttp://www.cataplexic.com/narcolepsy2.html Our Experiences with NarcolepsyTop/Health/Conditions_and_Diseases/Sleep_Disorders/Narcolepsy Offers stories about experiences with symptoms, doctors, medicines and everyday life.
Other resource N3 Narcolepsy in Our Familyhttp://www.thebestisyet.net/cgi-bin/cgiwrap/pando19/start.cgi/viewfrom11.htm Narcolepsy in Our FamilyTop/Health/Conditions_and_Diseases/Sleep_Disorders/Narcolepsy Virginia Ramage Smith describes the experience of narcolepsy in a family member.
Other resource N4 Sleepy Onlinehttp://www.geocities.com/sleepyonlineuk/ Sleepy OnlineTop/Health/Conditions_and_Diseases/Sleep_Disorders/Narcolepsy Information about narcolepsy-related issues. Includes personal stories and news about the disorder.
Other resource N5 Living with Narcolepsyhttp://groups.msn.com/LivingwithNarcolepsy/ Living with NarcolepsyTop/Health/Conditions_and_Diseases/Sleep_Disorders/Narcolepsy A place for people to help each other with chat, message board & group news available.
Other resource N6 Sleep Research: Zurichhttp://www.unizh.ch/phar/sleep/ Sleep Research: ZurichTop/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 N7 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 N8 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 N9 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 N10 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 N11 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 N12 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 N13 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 N14 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 N15 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 N16 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 N17 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 N18 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 N19 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 N20 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 N21 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 N22 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 N23 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 N24 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 N25 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 N26 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 N27 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 N28 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 N29 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 N30 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 N31 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 N32 Sleepcare Diagnostics Home Pagehttp://www.snorenomore.com/ Sleepcare Diagnostics Home PageTop/Health/Conditions_and_Diseases/Sleep_Disorders/Centers Sleep Disorders, Cincinnati, Ohio.
Other resource N33 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 N34 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 N35 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 N36 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 N37 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 N38 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 N39 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 N40 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 N41 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 N42 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 N43 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 N44 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 N45 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 N46 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 N47 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 N48 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 N49 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 N50 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 N51 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 N52 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 N53 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 N54 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 N55 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 N56 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 N57 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 N58 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 N59 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 N60 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 N61 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 N62 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 N63 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 N64 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 N65 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 N66 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 N67 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 N68 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 N69 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 N70 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 N71 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 N72 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 N73 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 N74 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 N75 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 N76 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 N77 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 N78 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 N79 Melorheostosishttp://www.melorheostosis.com MelorheostosisTop/Health/Conditions_and_Diseases/Rare_Disorders/Melorheostosis Personal histories and a message board, alongside links to research.
Other resource N80 Moyamoya Diseasehttp://chorus.rad.mcw.edu/doc/01076.html Moyamoya DiseaseTop/Health/Conditions_and_Diseases/Rare_Disorders/Moyamoya Definition, clinical symptoms and radiographic finding.

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