site URL - http://www.mpssociety.org.au
Site description: Informs and support those affected, directly or indirectly by an mucopolysaccharide or related disease. Offers information regarding each disease, a discussion forum, a picture gallery and news of events.
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| LINK | URI & TITLE | DESCRIPTION & TOPIC | |
| Previous 10 | Noonan Syndrome | http://www.heather.flyer.co.uk/noonan.htm Noonan Syndrome | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Noonan_Syndrome Story of 6-year-old Becky, with factsheet and resources. |
| Previous | Hereditary Disease Foundation | http://www.hdfoundation.org Hereditary Disease Foundation | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Organizations Information about this non profit organization, news, newsletters, recommended reading and contact details. |
| Random 1 | Inel | http://solair.eunet.yu/~inel/ Inel | Top/World/Srpski/Nauka/Medicina_i_zdravstvo/Instrumenti_i_Oprema Novosadska firma za snabdevanje medicinskim instrumentima i opremom. |
| Random 2 | Nacodoches Medical Center | http://www.nacmedicalcenter.com/ Nacodoches Medical Center | Top/Regional/North_America/United_States/Texas/Localities/N/Nacogdoches/Health Local source for health and wellness information. Provides a physician finder, events calendar, newsletter, health questionnaire, medical definitions and job opportunities. |
| Random 3 | Adam.com: An Overview | http://www.nlm.nih.gov/medlineplus/ency/article/000569.htm Adam.com: An Overview | Top/Health/Conditions_and_Diseases/Blood_Disorders/Anemia/Pernicious Looks at pernicious anemia, its causes, incidence and risk factors. |
| Random 4 | SOSARD - Southern Ontario Search And Rescue Dogs | http://home.interhop.net/sosard/ SOSARD - Southern Ontario Search And Rescue Dogs | Top/Health/Public_Health_and_Safety/Emergency_Services/Search_and_Rescue/Search_Dogs Canine search and rescue team, located in Pefferlaw, Ontario. Assists in search for missing persons, land and water cadaver recovery. |
| Random 5 | OMEGA Home Health Services | http://www.omegahhs.com OMEGA Home Health Services | Top/Regional/North_America/United_States/New_York/Localities/N/New_York_City/Health The agency provides registered nurses, licensed practical nurses, home health aides, personal care aides, companions, homemakers, and housekeepers to individuals and institutions. Covers services, FAQ, and employment. |
| Next | American Society of Genetic Disorders | http://www.ashg.org/genetics/ashg/ashgmenu.htm American Society of Genetic Disorders | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Organizations Informs health professionals, legislators, health policy makers, and the general public about all aspects of human genetics. |
| Next 10 | Dr. Greene: Breastfeeding with a Metabolic Disorder and Propionic Acidemia | http://www.drgreene.com/21_692.html Dr. Greene: Breastfeeding with a Metabolic Disorder and Propionic Acidemia | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Propionic_Acidemia Breastfeeding a child with propionic acidemia is discussed in this question and answer format. |
| Random 1 | Portland Dance Festival | http://home.teleport.com/~rshotts/ Portland Dance Festival | Top/Arts/Performing_Arts/Dance/Folk_Dancing/Country_and_Western/Competitions July event. Includes schedule, invited artists and contact details. |
| Random 4 | Aid to Christian Science health center allowed | http://cnn.com/2001/LAW/04/02/scotus.christianscien.ap/index.html Aid to Christian Science health center allowed | Top/News/Online_Archives/CNN.com/2001/April/Law [CNN] |
| Random 4 | Bailey Flower Essences | http://www.baileyessences.com/ Bailey Flower Essences | Top/Shopping/Health/Alternative/Flower_Essences Essences and remedies, sprays, geopathic stress neutralisation. Based in the UK. |
| Next 70 | Low Vision Council | http://www.lowvisioncouncil.org/ Low Vision Council | Top/Health/Conditions_and_Diseases/Eye_Disorders/Low_Vision Information and support for sufferers. Also provides facts about vision problems in the US today. |
| Previous 70 | Velo-Cardio-Facial Syndrome (VCFS) | http://www.upstate.edu/ent/velo.shtml Velo-Cardio-Facial Syndrome (VCFS) | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Velo-Cardio-Facial_Syndrome Overview of VCFS describing condition, causes and red flags. Provides contacts for more information and treatment. By the Center for the Diagnosis, Treatment and Study of Velo-Cardio-Facial Syndrome, SUNY Upstate Medical University (USA). |
| Next 170 | EIES of New Jersey | http://www.eiesofnj.org EIES of New Jersey | Top/Health/Conditions_and_Diseases/Eye_Disorders/Blindness/Organizations Describes how visually impaired persons can use a radio or telephone to listen to newspapers and magazines. |
| Previous 170 | The Luke and Rachel Batten Foundation | http://lrbf.org The Luke and Rachel Batten Foundation | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Batten Created to engage in education and medical research toward diagnosis, treatment and/or cure of Juvenile neuronal ceroid lipofuscinosis (Batten disease) and to assist persons with the disease. |
| Next 270 | |||
| Previous 270 | Cystic Fibrosis Australia | http://www.cysticfibrosisaustralia.org.au/ Cystic Fibrosis Australia | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Organizations Information about the organization and its aims and objectives, CF facts, events, links and contact details. |
| Other resource N0 | North American Cystic Fibrosis Conference in New Orleans | http://www.nacfconference.org North American Cystic Fibrosis Conference in New Orleans | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Conferences Information on program and location. |
| Other resource N1 | Iron Overload Diseases Association | http://www.ironoverload.org Iron Overload Diseases Association | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Hemochromatosis Information on hemochromatosis. Covered are the accepted protocols for diagnosis, treatment, maintenance and diet. |
| Other resource N2 | Links on Hemochromatosis | http://hemochromatose.tripod.com Links on Hemochromatosis | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Hemochromatosis A collection of links to sites, including scientific articles, related to the genetic iron overload disease. |
| Other resource N3 | American Hemochromatosis Society | http://www.americanhs.org/ American Hemochromatosis Society | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Hemochromatosis This organisation provides information and educates the public about hemochromatosis. They publish a newsletter and have an online support group. |
| Other resource N4 | Hereditary Hemochromatosis | http://munstermom.tripod.com/hemo.html Hereditary Hemochromatosis | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Hemochromatosis The website of a family whose members have hemochromatosis, with a description of how they are affected, and links to hemochromatosis sites. |
| Other resource N5 | Your Genes Your Health: Hemochromatosis | http://www.ygyh.org/ygyh/mason/ygyh.html?syndrome=hc§ion=whatisit&video=0 Your Genes Your Health: Hemochromatosis | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Hemochromatosis Multimedia guide where you can learn what it is, what causes it, what it is like to have it, and how it is inherited, diagnosed, and treated. |
| Other resource N6 | Silent suffering from hemochromatosis | http://www.alan.mannering.btinternet.co.uk Silent suffering from hemochromatosis | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Hemochromatosis A laymans non-technical account of living with hemochromatosis by Alan Mannering. |
| Other resource N7 | Joubert Syndrome Foundation | http://www.joubertfoundation.com/ Joubert Syndrome Foundation | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Joubert_Syndrome Organization, conferences and contact details. FAQs about the disease, information center and resources. |
| Other resource N8 | Readers Digest Health | http://www.rd.com/common/nav/index.jhtml?articleId=8612189 Readers Digest Health | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Joubert_Syndrome A brief discussion about joubert syndrome, its alternate names and further resources. |
| Other resource N9 | Ruan Crouse Support Appeal | http://www.ruancrouse.org Ruan Crouse Support Appeal | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Joubert_Syndrome Read about a young boy suffering from Joubert's Syndrome who lives in South Africa. |
| Other resource N10 | Austin Health Information | http://www.austin360.com/shared/health/adam/ency/article/001127.html Austin Health Information | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Crigler-Najjar_Syndrome An overview of crigler-najjar syndrome including symptoms, treatment and prevention. |
| Other resource N11 | Crigler-Najjar Association of America | http://criglernajjar.com Crigler-Najjar Association of America | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Crigler-Najjar_Syndrome Support site for parents and patients with Crigler-Najjar Syndrome Type 1 and Type 2. For physicians and researchers learn about essential treatment to avoid brain damage due to excessive bilirubin concentrations. |
| Other resource N12 | National Library of Medicine: Coffin-Lowry Syndrome (CLS) | http://www.nlm.nih.gov/mesh/jablonski/syndromes/syndrome238.html National Library of Medicine: Coffin-Lowry Syndrome (CLS) | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Coffin_Lowry_Syndrome A table showing the synonyms, a summary and major features. |
| Other resource N13 | XXY List | http://www.globalwebsol.com/xxy XXY List | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Klinefelter_Syndrome A private discussion list for which you must be an XXY to subscribe. |
| Other resource N14 | Klinefelter Syndrome? | http://xxy.50megs.com/INDEX.HTML Klinefelter Syndrome? | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Klinefelter_Syndrome A parent's point of view, with articles. |
| Other resource N15 | Turner Center | http://www.aaa.dk/turner/engelsk/ Turner Center | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Klinefelter_Syndrome Literature on XYY, Klinefelter, XXX, and Turner's Syndrome. |
| Other resource N16 | drkoop.com: Klinefelter Syndrome | http://www.drkoop.com/ency/article/000382.htm drkoop.com: Klinefelter Syndrome | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Klinefelter_Syndrome A chromosome abnormality that affects only men and causes hypogonadism. |
| Other resource N17 | Hailey Hailey Disease (Familial Benign Chronic Pemphigus) | http://www.bad.org.uk/patients/skin_disorders/hailey/ Hailey Hailey Disease (Familial Benign Chronic Pemphigus) | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Hailey-Hailey_Disease British Association of Dermatologists information sheet describing the symptoms and management of this inherited skin condition. |
| Other resource N18 | Keep Kids Healthy | http://www.keepkidshealthy.com/welcome/conditions/beckwithwiedemann.html Keep Kids Healthy | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Beckwith-Wiedemann_Syndrome A discussion of beckwith-wiedemann syndrome, its features and treatments. |
| Other resource N19 | Beckwith-Wiedemann Family Forum | http://www.geocities.com/beckwith_wiedemann/ Beckwith-Wiedemann Family Forum | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Beckwith-Wiedemann_Syndrome A way for people from around the world who are interested in BWS to get support and share information. |
| Other resource N20 | Beckwith-Wiedemann and Related Disorders Victoria | http://www.geocities.com/bwsandsgbs/BARDVicindex.html Beckwith-Wiedemann and Related Disorders Victoria | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Beckwith-Wiedemann_Syndrome Information resource for families affected by the overgrowth disorders Beckwith-Wiedemann Syndrome, Simpson-Golabi-Behmel Syndrome or Isolated Hemihypertrophy. |
| Other resource N21 | The CaF Directory | http://www.cafamily.org.uk/Direct/f30.html The CaF Directory | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Floating-Harbor_Syndrome A brief discussion about floating harbor syndrome, with some history and information about a support group located in Essex, United Kingdom. |
| Other resource N22 | Radiology: Von Hippel Lindau Disease | http://www.cc.nih.gov/ccc/papers/vonhip/toc.html Radiology: Von Hippel Lindau Disease | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Von_Hippel-Lindau Genetic, clinical and imaging features from the NIH. |
| Other resource N23 | Nail Patella Syndrome | http://hometown.aol.com/PACALI/npspage.html Nail Patella Syndrome | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Nail_Patella_Syndrome A patient-written site offering relevant medical information, photos, x-rays, discussion/support group, links to research and guest books where over 350 people have told their NPS stories. |
| Other resource N24 | Readers Digest Health | http://www.rd.com/common/nav/index.jhtml?articleId=8612551 Readers Digest Health | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Nail_Patella_Syndrome A general discussion about nail-patella syndrome, including its alternate names. |
| Other resource N25 | Alpha-1 Antitrypsin Deficiency Association | http://www.alpha1.org Alpha-1 Antitrypsin Deficiency Association | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Alpha-1_Antitrypsin_Deficiency Information about this non profit organization as well as the disorder, research, membership and contact details. |
| Other resource N26 | MedicineNet | http://www.medicinenet.com/Script/Main/Art.asp?li=MNI&ArticleKey=278 MedicineNet | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Alpha-1_Antitrypsin_Deficiency An Alpha-1 antitrypsin deficiency article with details such as what it is, normal lungs and how they work, smoking, risk factors, how it is inherited, signs, symptoms and treatment. |
| Other resource N27 | Late Manifestation of Alpha-1-antitrypsin Deficiency in the Adult | http://www.ikp.unibe.ch/lab2/A1AT.html Late Manifestation of Alpha-1-antitrypsin Deficiency in the Adult | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Alpha-1_Antitrypsin_Deficiency Literature review of late manifestations including hepatic decompensation and hepatocellular cancer in alpha-1-antitrypsin deficiency. |
| Other resource N28 | Understanding Alpha-1 Antitrypsin Deficiency | http://www.nlm.nih.gov/medlineplus/ency/article/000120.htm Understanding Alpha-1 Antitrypsin Deficiency | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Alpha-1_Antitrypsin_Deficiency Information on signs and symptoms of this disorder, as well as risk factors and treatment. |
| Other resource N29 | Batten Disease Information Page | http://www.ninds.nih.gov/health_and_medical/disorders/batten.htm Batten Disease Information Page | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Batten Information sheet compiled by NINDS, the National Institute of Neurological Disorders and Stroke. |
| Other resource N30 | Batten Disease Support and Research Association | http://www.bdsra.org/ Batten Disease Support and Research Association | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Batten BDSRA goals, support groups, local chapters, and resources for parents and families of Batten Disease patients. |
| Other resource N31 | Hereditary Angioedema Support Group | http://www.hereditaryangioedema.com/ Hereditary Angioedema Support Group | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Hereditary_Angioedema A non profit Organization dedicated to those families that are touched by a rare blood disease known as Hereditary Angioedema |
| Other resource N32 | Reader Digest Health | http://www.rd.com/common/nav/index.jhtml?articleId=8612968 Reader Digest Health | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Hereditary_Angioedema Hereditary Angioedema, a general discussion, alternate names and resources. |
| Other resource N33 | Alpha1 Antitrypsine Deficiency | http://home.att.net/~a1ad/intro.htm Alpha1 Antitrypsine Deficiency | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Personal_Pages One man's perspective and journey with A1AD and a list of links and other resources from the internet. |
| Other resource N34 | Maddy's Page | http://members.aol.com/kymwig Maddy's Page | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Personal_Pages The story of Madison Wigglesworth who has hurler syndrome. Includes photo album and links to informative sites. |
| Other resource N35 | Joy's Page | http://www.lebaronfamily.com Joy's Page | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Personal_Pages Personal account about a daughter having Opitc Nerve Hypoplasia, Septo-Optic Dysplasia and had either a Congenital stroke or has schizencephaly. |
| Other resource N36 | MCAD Angel | http://www.mcadangel.com MCAD Angel | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Personal_Pages Dedicated to raising awareness of the genetic disorder known as MCAD deficiency and the importance of early detection. |
| Other resource N37 | Caleb's Courage | http://www.geocities.com/calebwaddell Caleb's Courage | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Personal_Pages A baby's fight with MPS I, Hurler Syndrome. Information on the disease and links to other children fighting disease. |
| Other resource N38 | Mobius Syndrome | http://www.ninds.nih.gov/health_and_medical/disorders/mobius.htm Mobius Syndrome | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Mobius_Syndrome Also known as congenital facial diplegia, an information sheet compiled by NINDS. |
| Other resource N39 | Readers Digest Health | http://www.rd.com/common/nav/index.jhtml?articleId=8612437 Readers Digest Health | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Mobius_Syndrome A list of alternate names for mobius syndrome, along with a general discussion and resources. |
| Other resource N40 | The CaF Directory | http://www.cafamily.org.uk/Direct/f25.html The CaF Directory | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Fatty_Oxidation A description of fatty acid oxidation disorders and further resources. |
| Other resource N41 | Health Care Professionals' Guide to Newborn Screening | http://www.slh.wisc.edu/newborn/guide/disorders4.shtml Health Care Professionals' Guide to Newborn Screening | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Fatty_Oxidation General information on fatty acid oxidation. |
| Other resource N42 | DrHull | http://www.drhull.com/EncyMaster/H/hemihypertrophy.html DrHull | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Hemihypertrophy An article about hemihypertrophy, what it is, the features, follow up and prognosis. |
| Other resource N43 | e-Medicine: Genetics and Metabolic Disease: MKS | http://www.emedicine.com/ped/topic1390.htm e-Medicine: Genetics and Metabolic Disease: MKS | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Meckel-Gruber_Syndrome Meckel-Gruber syndrome, an introduction, clinical, differentials, work up, treatment and follow up. |
| Other resource N44 | National Library of Medicine: DGS | http://www.nlm.nih.gov/mesh/jablonski/syndromes/syndrome268.html National Library of Medicine: DGS | Top/Health/Conditions_and_Diseases/Genetic_Disorders/DiGeorge_Syndrome DiGeorge syndrome, the synonyms, a summary and list of major features. |
| Other resource N45 | Yahoo! Clubs VCFS Family Support | http://groups.yahoo.com/group/vcfsfamilysupport/ Yahoo! Clubs VCFS Family Support | Top/Health/Conditions_and_Diseases/Genetic_Disorders/DiGeorge_Syndrome Join, post and read mail for this group which concerns DiGeorge Syndrome and Velo-Cardio-Facial Syndrome. |
| Other resource N46 | MCW Healthlink: Incontinentia Pigmenti | http://healthlink.mcw.edu/article/921770674.html MCW Healthlink: Incontinentia Pigmenti | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Incontinentia_Pigmenti An article about this rare genetic disorder, its stages and symptoms. |
| Other resource N47 | Readers Digest Health: IP | http://www.rd.com/common/nav/index.jhtml?articleId=8612393 Readers Digest Health: IP | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Incontinentia_Pigmenti A general discussion about incontinentia pigmenti, with alternate names and further resources. |
| Other resource N48 | Ectodermal Dysplasia Society | http://www.incontinentia-pigmenti.org Ectodermal Dysplasia Society | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Incontinentia_Pigmenti Developed to help those affected by Incontinentia Pigmenti. Find information about this disease. |
| Other resource N49 | NORD: Laurence Moon Syndrome | http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Laurence%20Moon%20Syndrome NORD: Laurence Moon Syndrome | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Laurence-Moon_Syndrome Offers alternative names, a general discussion and further resources. |
| Other resource N50 | Hereditary Spastic Paraplegia | http://www.med.umich.edu/hsp/ Hereditary Spastic Paraplegia | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Hereditary_Spastic_Paraplegia In depth look at this disease by John K. Fink, M.D., including genetic analysis, clinical features and FAQs. |
| Other resource N51 | GeneClinics: An Overview | http://www.geneclinics.org/profiles/hsp/ GeneClinics: An Overview | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Hereditary_Spastic_Paraplegia In depth details about hereditary spastic paraplegia. Includes a summary, definition, categories, diagnosis, genetic counseling and resources. |
| Other resource N52 | Sotos Syndrome Support Association | http://www.well.com/user/sssa/ Sotos Syndrome Support Association | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Soto's_Syndrome Online community for education of professionals and families and to exchange ideas, gather research, and help one another cope. Quarterly newsletters, reference library, annual meetings, and conferences are available to members and professionals. |
| Other resource N53 | About com Guide Laura L. Jelliffe, Ph.D. | http://genetics.about.com/science/genetics/library/blsoto.htm About com Guide Laura L. Jelliffe, Ph.D. | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Soto's_Syndrome Symptoms, diagnosis, and treatment of Soto's syndrome. Information on research, community outreach and support. |
| Other resource N54 | NORD: Mannosidosis | http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Mannosidosis NORD: Mannosidosis | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Mannosidosis Offers alternative names, a general discussion and resources. |
| Other resource N55 | MCW Healthlink | http://healthlink.mcw.edu/article/921991711.html MCW Healthlink | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Zellweger_Syndrome An article about Zellweger syndrome, explaining what it is, the symptoms and prognosis. |
| Other resource N56 | NORD: Weaver Syndrome | http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Weaver%20Syndrome NORD: Weaver Syndrome | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Weaver_Syndrome Offers alternate names, a general discussion and further resources. |
| Other resource N57 | NORD: Waardenburg Syndrome | http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Waardenburg%20Syndrome NORD: Waardenburg Syndrome | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Waardenburg_Syndrome A general discussion about this disorder, followed by further resources. |
| Other resource N58 | National Foundation for Ectodermal Dysplasia | http://www.nfed.org/ National Foundation for Ectodermal Dysplasia | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Ectodermal_Dysplasia ED organization based in North America offering information/advice to individuals and supporting scientific research. Includes a newsletter, publications, FAQs and a list of services. |
| Other resource N59 | NORD: Ectodermal Dysplasias | http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Ectodermal%20Dysplasias NORD: Ectodermal Dysplasias | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Ectodermal_Dysplasia Offers synonyms, a general discussion and resources. |
| Other resource N60 | VhiHealth-e | http://www2.vhi.ie/topic/topic100587360 VhiHealth-e | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Pseudoxanthoma_Elasticum A definition of Pseudoxanthoma elasticum followed by a description, causes and symptoms, diagnosis, treatment options, prognosis and prevention. |
| Other resource N61 | Machado-Joseph Disease Fact Sheet | http://www.ninds.nih.gov/health_and_medical/pubs/machado-joseph.htm Machado-Joseph Disease Fact Sheet | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Machado-Joseph Developed by the National Institute of Neurological Disorders and Stroke (NINDS). |
| Other resource N62 | Online Mendelian Inheritance in Man: Costello Syndrome | http://www.ncbi.nlm.nih.gov/htbin-post/Omim/dispmim?218040 Online Mendelian Inheritance in Man: Costello Syndrome | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Costello_Syndrome References, gene map, and clinical synopsis. |
| Other resource N63 | Yahoo! Groups | http://groups.yahoo.com/group/dubowitz_syndrome/ Yahoo! Groups | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Dubowitz_Syndrome An email support group for those interested in Dubowitz syndrome. Join, post and read mail. |
| Other resource N64 | Velo-Cardio-Facial Syndrome (VCFS) | http://www.upstate.edu/ent/velo.shtml Velo-Cardio-Facial Syndrome (VCFS) | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Velo-Cardio-Facial_Syndrome Overview of VCFS describing condition, causes and red flags. Provides contacts for more information and treatment. By the Center for the Diagnosis, Treatment and Study of Velo-Cardio-Facial Syndrome, SUNY Upstate Medical University (USA). |
| Other resource N65 | MaxAppeal | http://www.maxappeal.org.uk MaxAppeal | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Velo-Cardio-Facial_Syndrome A British charity that supports children, families and the medical community concerning DiGeorge syndrome, also known as velo-cardial facial syndrome (VCFS) and 22q11 syndrome. Find events, news, info sheets, and a newsletter. |
| Other resource N66 | Canadian Opitz Family Network | http://www.apollos.net/arena/opitz/definition.html Canadian Opitz Family Network | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Opitz_Syndrome A description of Opitz G/BBB Syndrome. |
| Other resource N67 | Family Village | http://www.familyvillage.wisc.edu/lib_optz.htm Family Village | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Opitz_Syndrome Opitz G Syndrome information and contact links. |
| Other resource N68 | TAR Syndrome | http://personal.nbnet.nb.ca/seepat/ TAR Syndrome | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Thrombocytopenia_Absent_Radius_Syndrome A personal page about this disorder including links to information. |
| Other resource N69 | The Sturge-Weber Foundation | http://www.Sturge-Weber.com The Sturge-Weber Foundation | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Sturge-Weber_Syndrome A support site for individuals and professionals dealing with Sturge-Weber syndrome, port-wine stains and Klippel Trenaunay. The Foundation acts as clearing house for information and a focus for research. |
| Other resource N70 | Sturge-Weber Syndrome Center | http://www.neuro.jhmi.edu/HopkinsSWSCenter/index.htm Sturge-Weber Syndrome Center | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Sturge-Weber_Syndrome Clinical center dedicated to the treatment and study of SWS at Johns Hopkins Hospital in Baltimore. Find disease information, diagnosing, and treatment as well as details about the facility. |
| Other resource N71 | Robinow Syndrome Foundation | http://www.robinow.org/ Robinow Syndrome Foundation | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Robinow_Syndrome Details about the organization as well as the disease. Includes general information, a survey, newsletter and photos. |
| Other resource N72 | NORD: Robinow Syndrome | http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Robinow%20Syndrome NORD: Robinow Syndrome | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Robinow_Syndrome Offers a general discussion, the synonyms and further resources. |
| Other resource N73 | NINDS: Schizencephaly | http://www.ninds.nih.gov/health_and_medical/disorders/schizencephaly.htm NINDS: Schizencephaly | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Schizencephaly Information sheet compiled the National Institute of Neurological Disorders and Stroke. |
| Other resource N74 | Smith Lemli Opitz Syndrome | http://members.aol.com/slo97/ Smith Lemli Opitz Syndrome | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Smith_Lemli_Opitz_Syndrome Advocacy and exchange. Includes a detailed description, diagnosis, the natural history, biochemistry, genetics, treatment and contact details. |
| Other resource N75 | The CaF Directory | http://www.cafamily.org.uk/Direct/s33.html The CaF Directory | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Smith-Magenis_Syndrome A definition of Smith-Magenis syndrome, its inheritance pattern, pre-natal diagnosis and a support group in the United Kingdom. |
| Other resource N76 | The CaF Directory | http://www.cafamily.org.uk/Direct/s24.html The CaF Directory | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Shwachman_Syndrome A definition of Shwachman syndrome, its inheritance pattern, pre-natal diagnosing and a support group in the United Kingdom. |
| Other resource N77 | Shwachman-Diamond America | http://shwachmandiamondamerica.org Shwachman-Diamond America | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Shwachman_Syndrome Profiles SDA, a nonprofit that educates doctors and families about shwachman-diamond syndrome and also supports research. |
| Other resource N78 | Katie's Journey | http://www.katiesjourney.50megs.com Katie's Journey | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Shwachman_Syndrome Katie has Shwachman-Diamond Syndrome and needs a bone barrow transplant. Find disease information and links to support organizations. |
| Other resource N79 | NORD: Proteus Syndrome | http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Proteus%20Syndrome NORD: Proteus Syndrome | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Proteus_Syndrome Offers synonyms, a general discussion and further resources. |
| Other resource N80 | NORD: Popliteal Pterygium Syndrome | http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Popliteal%20Pterygium%20Syndrome%20 NORD: Popliteal Pterygium Syndrome | Top/Health/Conditions_and_Diseases/Genetic_Disorders/Popliteal_Pterygium_Syndrome Offers synonyms, a general discussion and further resources. |