Hereditary Hemorrhagic Telangiectasia Foundation International, Inc.

site URL - http://www.hht.org/

Site description: Provides patients, families, and doctors with educational information and fosters an exchange of information about the diagnosis and treatment of HHT between patients, physicians, researchers, genetic counselors, agencies, educators, and the general public.




Topic: Top/Health/Conditions_and_Diseases/Genetic_Disorders/Organizations

LINKURI & TITLEDESCRIPTION & TOPIC
Previous 10NORD - Noonan Syndromehttp://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Noonan%20Syndrome NORD - Noonan SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Noonan_Syndrome Offers the synonyms, a general discussion and further resources.
PreviousGenetic Information and Patient Services, Inc (GAPS)http://www.icomm.ca/geneinfo Genetic Information and Patient Services, Inc (GAPS)Top/Health/Conditions_and_Diseases/Genetic_Disorders/Organizations Links to online definitions, information sites, and support groups for genetic disorders and birth defects.
Random 1Omnes Ad Unumhttp://www.911unity.com Omnes Ad UnumTop/Business/Healthcare/Products_and_Services/Emergency Specially designed gold rings and pendants to promote unity for those in the emergency services.
Random 2Crossbordernurses.comhttp://www.crossbordernurses.com/ Crossbordernurses.comTop/Business/Healthcare/Employment/Recruitment_and_Staffing/Recruiters Recruitment firm seeking nurses nurses in Canada for health care facilities in the United States.
Random 3Mountain Gardenshttp://webpages.charter.net/czar207196/intro.htm Mountain GardensTop/Shopping/Health/Alternative/Herbs Offering seeds, plants, root cuttings, tinctures, teas, and tonics. Also offers self-help, preservation, and other related herbal articles.
Random 4Today's Touch for Tomorrow's Healthhttp://www.todaystouch.com/ Today's Touch for Tomorrow's HealthTop/Regional/North_America/United_States/Ohio/Localities/S/Strongsville/Health Massage therapy clinic. Bill Hansen, owner.
Random 5Richmond Medical Centrehttp://www.richmondmc.co.uk/ Richmond Medical CentreTop/Regional/Europe/United_Kingdom/England/West_Midlands/Solihull_Metropolitan_Borough/Health Provides information about appointments, prescriptions, and surgery times, together with details of the doctors and other practice staff.
NextDana's Angels Research Trusthttp://www.danasangels.org Dana's Angels Research TrustTop/Health/Conditions_and_Diseases/Genetic_Disorders/Organizations Information from this charitable organization on Niemann-Pick Type C disease and how individuals can contribute funds for research for this fatal childhood disease.
Next 10NORD: Acidemia, Propionichttp://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Acidemia%2C%20Propionic NORD: Acidemia, PropionicTop/Health/Conditions_and_Diseases/Genetic_Disorders/Propionic_Acidemia Includes the synonyms, a general discussion and further resources.
Random 1Censored MGM Cartoonshttp://www.toonzone.net/looney/ltcuts/ Censored MGM CartoonsTop/Arts/Animation/Studios/MGM Information on cartoons MGM has censored for one reason or another.
Random 4Euro Beauty Marthttp://www.eurobeautymart.com/ Euro Beauty MartTop/Shopping/Health/Beauty/Bath_and_Body Hard to find German deodorants, soaps, and bath gels. Brands include Fa, Rexona, Badedas, and Lux. Ships to US addresses only.
Random 4Dancing Wheelshttp://www.gggreg.com/dancingwheels.htm Dancing WheelsTop/Arts/Performing_Arts/Dance/Modern/Companies/United_States/Eastern A professional, integrated, modern dance company comprised of dancers with (using a wheelchair for movement) and without disabilities. The company is recognized as a pioneer in the art of integrated (mixed abilities)dance. (Cleveland, OH USA)
Next 70The Hal4 FAQhttp://www.davewilliams.plus.com/halfaq/index.htm The Hal4 FAQTop/Health/Conditions_and_Diseases/Eye_Disorders/Low_Vision Unofficial information and suggestions about the Hal, a multilingual screen reader software program for Windows. Also includes information on braille display and speech synthesizer.
Previous 70Yahoo! Groups: VCFS Family Supporthttp://groups.yahoo.com/group/vcfsfamilysupport/ Yahoo! Groups: VCFS Family SupportTop/Health/Conditions_and_Diseases/Genetic_Disorders/Velo-Cardio-Facial_Syndrome Join, post and read mail for this group which concerns DiGeorge Syndrome and Velo-Cardio-Facial Syndrome.
Next 170HERIB - Hull and East Riding Institute for the Blindhttp://beehive.thisishull.co.uk/HERIB HERIB - Hull and East Riding Institute for the BlindTop/Health/Conditions_and_Diseases/Eye_Disorders/Blindness/Organizations Provides outings, support, resources and help for visually impaired people in the local area.
Previous 170Hereditary Angioedema Support Grouphttp://www.hereditaryangioedema.com/ Hereditary Angioedema Support GroupTop/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
Next 270
Previous 270BioSpace News: Cystic fibrosishttp://www.biospace.com/news_rxtarget.cfm?RxTargetID=63 BioSpace News: Cystic fibrosisTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/News_and_Media News on new developments with Cystic Fibrosis. Kept in an easy to use format with up-to-date links.
Other resource N0 San Diego Bicarbonate Conference - HCO3 and Cystic Fibrosishttp://hco3-cysticfibrosis.ucsd.edu/index.htm San Diego Bicarbonate Conference - HCO3 and Cystic FibrosisTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Conferences Conference photos, list of speakers and abstracts.
Other resource N1 Iron Overload: Hemosiderosis; Hemochromatosishttp://www.merck.com/pubs/mmanual/section11/chapter128/128a.htm Iron Overload: Hemosiderosis; HemochromatosisTop/Health/Conditions_and_Diseases/Genetic_Disorders/Hemochromatosis Merck Manual looks at this disorder, its signs and symptoms, diagnosis and treatment.
Other resource N2 Iron Disorders Institutehttp://www.irondisorders.org/ Iron Disorders InstituteTop/Health/Conditions_and_Diseases/Genetic_Disorders/Hemochromatosis Non-profit National Voluntary Health Agency that provides information about disorders of iron such as hemochromatosis.
Other resource N3 CDC: Iron Overload and Hemochromatosishttp://www.cdc.gov/nccdphp/dnpa/hemochromatosis/index.htm CDC: Iron Overload and HemochromatosisTop/Health/Conditions_and_Diseases/Genetic_Disorders/Hemochromatosis The US Centers for Disease Control and Prevention provide reviewed information on hemochromatosis, including screening, information for patients, FAQ and resources.
Other resource N4 Haemochromatosis UKhttp://www.has-ironoverload.co.uk Haemochromatosis UKTop/Health/Conditions_and_Diseases/Genetic_Disorders/Hemochromatosis Light hearted and simple terms in explaining the serious disease of haemochromatosis.
Other resource N5 Irish Haemochromatosis Societyhttp://www.haemochromatosis-ir.com/ Irish Haemochromatosis SocietyTop/Health/Conditions_and_Diseases/Genetic_Disorders/Hemochromatosis Irish volunteer organisation to support people with haemochromatosis and promote the disease.
Other resource N6 Iron Overload Disorder Support Forumhttp://www.iodforum.net Iron Overload Disorder Support ForumTop/Health/Conditions_and_Diseases/Genetic_Disorders/Hemochromatosis Support group for those affected by hemochromatosis
Other resource N7 Joubert Syndromehttp://www.ninds.nih.gov/health_and_medical/disorders/joubert.htm Joubert SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Joubert_Syndrome Information sheet compiled by NINDS.
Other resource N8 TheFetus.nethttp://www.thefetus.net/page.php?id=122 TheFetus.netTop/Health/Conditions_and_Diseases/Genetic_Disorders/Joubert_Syndrome A detailed look at Joubert Syndrome starting with a definition, etiology, prenatal diagnosis, clinical findings, genetics and prognosis.
Other resource N9 Yahoo Healthhttp://health.yahoo.com/health/dc/000392/0.html Yahoo HealthTop/Health/Conditions_and_Diseases/Genetic_Disorders/Familial_Hypercholesterolemia An overview of familial hypercholesterolemia including, symptoms, treatment and prevention.
Other resource N10 Crigler-Najjar Diseasehttp://it.geocities.com/criglernajjar Crigler-Najjar DiseaseTop/Health/Conditions_and_Diseases/Genetic_Disorders/Crigler-Najjar_Syndrome Bi-lingual site with information and links on this disease.
Other resource N11 Coffin-Lowry Syndrome Foundationhttp://clsfoundation.tripod.com/ Coffin-Lowry Syndrome FoundationTop/Health/Conditions_and_Diseases/Genetic_Disorders/Coffin_Lowry_Syndrome Information about the organization as well as CLS. Includes FAQs, news, links, parent and foundation contact details.
Other resource N12 NORD: Coffin Lowry Syndromehttp://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Coffin%20Lowry%20Syndrome NORD: Coffin Lowry SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Coffin_Lowry_Syndrome General information about this syndrome, its alternative names and further resources.
Other resource N13 Klinefelter Syndromehttp://www.emedicine.com/PED/topic1252.htm Klinefelter SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Klinefelter_Syndrome Overview and medical information.
Other resource N14 Genetic Org Homehttp://www.genetic.org/ Genetic Org HomeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Klinefelter_Syndrome Information about Klinefelter Syndrome, when it was first discovered, the common characteristics, and treatment.
Other resource N15 XXY Information (Klinefelter Syndrome)http://www.47xxy.org/XXYframe.html XXY Information (Klinefelter Syndrome)Top/Health/Conditions_and_Diseases/Genetic_Disorders/Klinefelter_Syndrome Medical information, news, and links.
Other resource N16 Yahoo!: XXYListhttp://groups.yahoo.com/group/xxylist Yahoo!: XXYListTop/Health/Conditions_and_Diseases/Genetic_Disorders/Klinefelter_Syndrome XXY is a genetic anomaly which occurs 1 in 500 in the general population today. Men with this condition usually have Klinefelters Syndrome. Offers joining instructions for this support group.
Other resource N17 BWSN: Beckwith-Wiedemann Syndromehttp://beckwith-wiedemann.org/index.html BWSN: Beckwith-Wiedemann SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Beckwith-Wiedemann_Syndrome Information about this organization, created for parents, professionals, and others interested in this disease. An invitation to join an email support group.
Other resource N18 National Library of Medicinehttp://www.nlm.nih.gov/mesh/jablonski/syndromes/syndrome052.html National Library of MedicineTop/Health/Conditions_and_Diseases/Genetic_Disorders/Beckwith-Wiedemann_Syndrome weckwith-wiedemann syndrome, a list of synonyms, a summary and a major features.
Other resource N19 Beckwith-Wiedemann Family Chat Forumhttp://groups.yahoo.com/group/bwschat Beckwith-Wiedemann Family Chat ForumTop/Health/Conditions_and_Diseases/Genetic_Disorders/Beckwith-Wiedemann_Syndrome An international email discussion group promoting the exchange of Beckwith-Wiedemann Syndrome (BWS) related information and support.
Other resource N20 Floating Harbor Syndrome Support Grouphttp://hometown.aol.com/jdswanson Floating Harbor Syndrome Support GroupTop/Health/Conditions_and_Diseases/Genetic_Disorders/Floating-Harbor_Syndrome Provides a description, including a list of symptoms, things to do and links to other resources. Also contact detail.
Other resource N21 Readers Digest Healthhttp://www.rd.com/common/nav/index.jhtml?articleId=8612919 Readers Digest HealthTop/Health/Conditions_and_Diseases/Genetic_Disorders/Floating-Harbor_Syndrome A general discussion about floating harbor syndrome and some resources for further information.
Other resource N22 Family Villagehttp://www.familyvillage.wisc.edu/lib_vonh.htm Family VillageTop/Health/Conditions_and_Diseases/Genetic_Disorders/Von_Hippel-Lindau Links to chat rooms, web sites and information about Von Hippel Lindau's disease.
Other resource N23 Nail Patella Syndrome Worldwidehttp://www.nailpatella.org Nail Patella Syndrome WorldwideTop/Health/Conditions_and_Diseases/Genetic_Disorders/Nail_Patella_Syndrome The home page of Nail-Patella Syndrome Worldwide, the only non-profit serving the needs of people with Nail-Patella Syndrome. Includes information on the syndrome and the work of the organization.
Other resource N24 John Hopkins Medical Institution - NPShttp://www.hopkinsmedicine.org/healthnewsfeed/hnf_839.htm John Hopkins Medical Institution - NPSTop/Health/Conditions_and_Diseases/Genetic_Disorders/Nail_Patella_Syndrome Information about nail patella syndrome, what it is, a look at the gene, and links to resources and support groups.
Other resource N25 Alpha One Foundationhttp://www.alphaone.org Alpha One FoundationTop/Health/Conditions_and_Diseases/Genetic_Disorders/Alpha-1_Antitrypsin_Deficiency Information about the organization, research, and news as well as alpha 1-antitrypsin deficiency.
Other resource N26 University of Cambridgehttp://www.cimr.cam.ac.uk/people/profiles/lomas_david_profile.html University of CambridgeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Alpha-1_Antitrypsin_Deficiency Laboratory in Cambridge, UK, researching the cause and treatment of alpha1-antitrypsin deficiency.
Other resource N27 Spiderspunhttp://www.spiderspun.net SpiderspunTop/Health/Conditions_and_Diseases/Genetic_Disorders/Alpha-1_Antitrypsin_Deficiency A haven for those affected by Alpha-1 Antirypsin Deficiency. Facts, chat rooms, assistance programs, and reference material.
Other resource N28 Pediatric Oncallhttp://www.pediatriconcall.com/fordoctor/diseasesandcondition/alpha1deficiency.asp Pediatric OncallTop/Health/Conditions_and_Diseases/Genetic_Disorders/Alpha-1_Antitrypsin_Deficiency Offers a description of alpha–l antitrypsin, including the affects on the liver and how it presents.
Other resource N29 Batten Disease Family Associationhttp://www.bdfauk.freeserve.co.uk/ Batten Disease Family AssociationTop/Health/Conditions_and_Diseases/Genetic_Disorders/Batten Information about the BDFA, which provides supportive, informative, networking for the families, carers and professional giving care to children and adults with this disease in the United Kingdom.
Other resource N30 seeAbility - Juvenile Battens Diseasehttp://www.seeability.org/randd/jboverview.htm seeAbility - Juvenile Battens DiseaseTop/Health/Conditions_and_Diseases/Genetic_Disorders/Batten An in depth article on this disorder, includes the stages of the disease and the symptoms.
Other resource N31 E-Medicine: HAEhttp://www.emedicine.com/derm/topic24.htm E-Medicine: HAETop/Health/Conditions_and_Diseases/Genetic_Disorders/Hereditary_Angioedema An in dept look at hereditary angioedema beginning with an introduction, clinical features, differentials, work up, treatment, medication and follow up.
Other resource N32 Adam.com: An Overviewhttp://www.nlm.nih.gov/medlineplus/ency/article/001456.htm Adam.com: An OverviewTop/Health/Conditions_and_Diseases/Genetic_Disorders/Hereditary_Angioedema A definition of hereditary angioedema along with a look at the causes, incidence and risk factors.
Other resource N33 Ashly's Skeletal Dysplasiahttp://www.angelfire.com/or2/ashlysworldofwonders/about.html Ashly's Skeletal DysplasiaTop/Health/Conditions_and_Diseases/Genetic_Disorders/Personal_Pages A mom describes her daughters disorder which is thought to be a metabolic disease similar to mucopolysachharisdoses. Also links to other related sites.
Other resource N34 Taryn's World: About Switcheshttp://www.tarynsworld.org/taryn/switches.htm Taryn's World: About SwitchesTop/Health/Conditions_and_Diseases/Genetic_Disorders/Personal_Pages Personal page for kids and parents about genetic disorders, especially mannosidosis.
Other resource N35 XXXXY Syndromehttp://www.xxxxysyndrome.com XXXXY SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Personal_Pages Information on this rare chromosomal abnormality.
Other resource N36 Mowat-Wilsonhttp://www.mowatwilson.org Mowat-WilsonTop/Health/Conditions_and_Diseases/Genetic_Disorders/Personal_Pages Discussion site for mowat-wilson syndrome. Includes a links page, photos, a community page and a discussion area.
Other resource N37 McArdle's Disease Resourceshttp://members.aol.com/itsgumby/ McArdle's Disease ResourcesTop/Health/Conditions_and_Diseases/Genetic_Disorders/McArdle's Information, resources, and contacts for those affected by this disease or any of the glycogen storage diseases.
Other resource N38 MCW Healthlink: Mobius Syndromehttp://healthlink.mcw.edu/article/921441372.html MCW Healthlink: Mobius SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Mobius_Syndrome Details about this disease, including what it is, the causes, symptoms and treatment options.
Other resource N39 Lowe Syndrome Associationhttp://www.lowesyndrome.org Lowe Syndrome AssociationTop/Health/Conditions_and_Diseases/Genetic_Disorders/Lowe_Syndrome Information about this disease and the international organization that deals with it.
Other resource N40 Fatty Oxidation Disordershttp://www.fodsupport.org/ Fatty Oxidation DisordersTop/Health/Conditions_and_Diseases/Genetic_Disorders/Fatty_Oxidation Informational site provides details on newborn screening, on numerous diseases, medical information and support resources such as a newsletter and email List.
Other resource N41 Lchad.comhttp://www.lchad.com Lchad.comTop/Health/Conditions_and_Diseases/Genetic_Disorders/Fatty_Oxidation Support site for families affected by Long-Chain 3 Hydroxyacyl CoA Dehydrogense (LCHAD). Includes profiles of people with LCHAD and general information about the disorder.
Other resource N42 Hemihypertrophyhttp://www.ibis-birthdefects.org/start/hemihype.htm HemihypertrophyTop/Health/Conditions_and_Diseases/Genetic_Disorders/Hemihypertrophy A description from International Birth Defects Information Systems.
Other resource N43 Human Genome Mapping Projecthttp://www.hgmp.mrc.ac.uk/dhmhd-bin/hum-look-up?1095 Human Genome Mapping ProjectTop/Health/Conditions_and_Diseases/Genetic_Disorders/Meckel-Gruber_Syndrome A list of features for meckel-gruber syndrome, also known as dysencephalia splanchocystica.
Other resource N44 NCBI Genes and Diseaseshttp://www.ncbi.nlm.nih.gov/disease/DGS.html NCBI Genes and DiseasesTop/Health/Conditions_and_Diseases/Genetic_Disorders/DiGeorge_Syndrome An article about DiGeorge syndrome with a description, causes, research and treatment.
Other resource N45 22q and You Centerhttp://www.chop.edu/consumer/jsp/division/service.jsp?id=74652 22q and You CenterTop/Health/Conditions_and_Diseases/Genetic_Disorders/DiGeorge_Syndrome Symptoms, diagnosis, and treatment of chromosome 22q11.2 deletion, a genetic disorder associated with DiGeorge, velocardiofacial and other syndromes.
Other resource N46 Incontinentia Pigmentihttp://www.ninds.nih.gov/health_and_medical/disorders/inconpig_doc.htm Incontinentia PigmentiTop/Health/Conditions_and_Diseases/Genetic_Disorders/Incontinentia_Pigmenti Informational sheet compiled by National Institute of Neurological Disorders and Stroke.
Other resource N47 Incontinentia Pigmenti International Foundationhttp://imgen.bcm.tmc.edu/ipif/ Incontinentia Pigmenti International FoundationTop/Health/Conditions_and_Diseases/Genetic_Disorders/Incontinentia_Pigmenti Details about the organization that is dedicated to research into the causes and treatment of this genetic disease. Includes information about the disease, genetics and genes.
Other resource N48 Laurence Moon Bardet Biedl Societyhttp://www.lmbbs.org.uk Laurence Moon Bardet Biedl SocietyTop/Health/Conditions_and_Diseases/Genetic_Disorders/Laurence-Moon_Syndrome Fully accessible site for people with LMBB, their families, friends, carers and interested professionals. Opinions, news, views, research, updates, and contact details.
Other resource N49 Urea Cycle Disordershttp://www.2endure.com Urea Cycle DisordersTop/Health/Conditions_and_Diseases/Genetic_Disorders/Urea_Cycle Information, medical links and a message board. The true story of a one family's struggle with this illness.
Other resource N50 Hereditary Spastic Paraplegiahttp://www.ninds.nih.gov/health_and_medical/disorders/hereditarysp.htm Hereditary Spastic ParaplegiaTop/Health/Conditions_and_Diseases/Genetic_Disorders/Hereditary_Spastic_Paraplegia HSP information sheet compiled by the National Institute of Neurological Disorders and Stroke.
Other resource N51 MCW Healthlink: HSPhttp://healthlink.mcw.edu/article/921730935.html MCW Healthlink: HSPTop/Health/Conditions_and_Diseases/Genetic_Disorders/Hereditary_Spastic_Paraplegia An article about hereditary spastic paraplegia, also called familial spastic paralysis.
Other resource N52 Soto's Syndromehttp://www.ninds.nih.gov/health_and_medical/disorders/sotos.htm Soto's SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Soto's_Syndrome Also known as cerebral gigantism, an information sheet compiled by NINDS.
Other resource N53 Sotos Syndrome Support Association of Canadahttp://www.sssac.com Sotos Syndrome Support Association of CanadaTop/Health/Conditions_and_Diseases/Genetic_Disorders/Soto's_Syndrome Provides educational and emotional support, and current information. English and French.
Other resource N54 Zellweger Syndromehttp://www.ninds.nih.gov/health_and_medical/disorders/zellwege_doc.htm Zellweger SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Zellweger_Syndrome Information page compiled by NINDS, the National Institute of Neurological Disorders and Stroke.
Other resource N55 NORD: Zellweger Syndromehttp://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Zellweger%20Syndrome NORD: Zellweger SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Zellweger_Syndrome Offers alternate names, a general discussion and resources.
Other resource N56 From the Window of a Weaver's Syndromehttp://www.rumeysagelgi.com From the Window of a Weaver's SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Weaver_Syndrome Rumeysa Gelgi is the first and the only Weaver's Syndrome case in Turkey and 27th case over the World. Find information about her life and the disease.
Other resource N57 The CaF Directoryhttp://www.cafamily.org.uk/Direct/e14.html The CaF DirectoryTop/Health/Conditions_and_Diseases/Genetic_Disorders/Ectodermal_Dysplasia Information about the ectodermal dysplasia disorders, the inheritance patterns and pre-natal diagnosing.
Other resource N58 The Ectodermal Dysplasia Mailing Listhttp://hometown.aol.com/charliein/ed/home.html The Ectodermal Dysplasia Mailing ListTop/Health/Conditions_and_Diseases/Genetic_Disorders/Ectodermal_Dysplasia Includes instructions on joining the list, FAQs and links to further resources.
Other resource N59 PXE Internationalhttp://pxe.org PXE InternationalTop/Health/Conditions_and_Diseases/Genetic_Disorders/Pseudoxanthoma_Elasticum The comprehensive source for pseudoxanthoma elasticum research and world wide activities.
Other resource N60 International Joseph Disease Foundationhttp://www.ijdf.net International Joseph Disease FoundationTop/Health/Conditions_and_Diseases/Genetic_Disorders/Machado-Joseph Offers education, medical referrals, up-dates, and support to all individuals interested in Machado-Joseph Disease.
Other resource N61 Machado Joseph Diseasehttp://www.mazornet.com/genetics/machado.asp Machado Joseph DiseaseTop/Health/Conditions_and_Diseases/Genetic_Disorders/Machado-Joseph Origins of the disease and the Jewish connection. Symptoms, diagnosis, ongoing research information, and resources.
Other resource N62 Costello Kidshttp://www.costellokids.co.uk/ Costello KidsTop/Health/Conditions_and_Diseases/Genetic_Disorders/Costello_Syndrome Official site of the International Costello Syndrome Support Group. Includes medical information, photographs and videos, therapy ideas, news, and links.
Other resource N63 Health Library - Dubowitz Syndromehttp://www.laurushealth.com/library/healthguide/IllnessConditions/_showTopic.asp?topic_id=10516&pd_id=12016&sgml_id=nord198 Health Library - Dubowitz SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Dubowitz_Syndrome The synonyms of this disorder with a general discussion and further resources.
Other resource N64 Yahoo! Groups: VCFS Family Supporthttp://groups.yahoo.com/group/vcfsfamilysupport/ Yahoo! Groups: VCFS Family SupportTop/Health/Conditions_and_Diseases/Genetic_Disorders/Velo-Cardio-Facial_Syndrome Join, post and read mail for this group which concerns DiGeorge Syndrome and Velo-Cardio-Facial Syndrome.
Other resource N65 Usher Syndromehttp://www.rpsa.org.za/a6.htm Usher SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Usher_Syndrome A description of this disease from Retinal Preservation Foundation of South Africa.
Other resource N66 National Library of Medicine: OShttp://www.nlm.nih.gov/mesh/jablonski/syndromes/syndrome498.html National Library of Medicine: OSTop/Health/Conditions_and_Diseases/Genetic_Disorders/Opitz_Syndrome Opitz syndrome, the synonyms, a summary and a list of major features.
Other resource N67 The Opitz G/BBB Family Networkhttp://www.opitznet.org The Opitz G/BBB Family NetworkTop/Health/Conditions_and_Diseases/Genetic_Disorders/Opitz_Syndrome Online support and information for families with Opitz G/BBB Syndrome. Provides families with easy-to-read information about the syndrome.
Other resource N68 TAR Syndrome Support Grouphttp://www.ivh.se/TAR/contents.htm TAR Syndrome Support GroupTop/Health/Conditions_and_Diseases/Genetic_Disorders/Thrombocytopenia_Absent_Radius_Syndrome For families of children born with this rare disorder.
Other resource N69 NORD: Sturge Weber Syndromehttp://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Sturge%20Weber%20Syndrome NORD: Sturge Weber SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Sturge-Weber_Syndrome Offers a list of synonyms, a general discussion and further resources.
Other resource N70 Prune Belly Syndrome Networkhttp://www.prunebelly.org/ Prune Belly Syndrome NetworkTop/Health/Conditions_and_Diseases/Genetic_Disorders/Prune_Belly_Syndrome Devoted to health education, information and support for the person with the condition as well as their friends, families or the health professionals who treat them. Also known as Eagle-Barrett syndrome.
Other resource N71 National Library of Medicinehttp://www.nlm.nih.gov/mesh/jablonski/syndromes/syndrome562.html National Library of MedicineTop/Health/Conditions_and_Diseases/Genetic_Disorders/Robinow_Syndrome The synonyms of Robinow syndrome, a summary and a list of major features.
Other resource N72 The CaF Directoryhttp://www.cafamily.org.uk/Direct/s30.html The CaF DirectoryTop/Health/Conditions_and_Diseases/Genetic_Disorders/Russell_Silver_Syndrome A definition of Silver Russell syndrome, its inheritance patterns, and pre-natal diagnosing. Also lists a support group in the United Kingdom.
Other resource N73 Cleveland Clinichttp://www.clevelandclinic.org/health/health-info/docs/1300/1338.asp Cleveland ClinicTop/Health/Conditions_and_Diseases/Genetic_Disorders/Schizencephaly A description of schizencephaly including treatments and prognosis and further reading.
Other resource N74 Emergency Medicinehttp://www.emedicine.com/ped/topic2117.htm Emergency MedicineTop/Health/Conditions_and_Diseases/Genetic_Disorders/Smith_Lemli_Opitz_Syndrome An extensive article about Smith-Lemli-Opitz syndrome, a multiple congenital anomalies/mental retardation syndrome caused by a defect in cholesterol synthesis.
Other resource N75 NORD: Smith Magenis Syndromehttp://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Smith%20Lemli%20Opitz%20Syndrome NORD: Smith Magenis SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Smith-Magenis_Syndrome Offers the synonyms, a general discussion and further resources.
Other resource N76 Shwachman Syndromehttp://www.chariot.net.au/~dna/angelica.html Shwachman SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Shwachman_Syndrome A mothers story to diagnose this disorder before a team of doctors could.
Other resource N77 Shwachman-Diamond Syndrome Family/Friendshttp://groups.yahoo.com/group/shwachmansyndrome/ Shwachman-Diamond Syndrome Family/FriendsTop/Health/Conditions_and_Diseases/Genetic_Disorders/Shwachman_Syndrome An email list for families, friends, parents and individuals affected by Shwachman-Diamond Syndrome.
Other resource N78 Proteus Syndrome Foundationhttp://www.proteus-syndrome.org/ Proteus Syndrome FoundationTop/Health/Conditions_and_Diseases/Genetic_Disorders/Proteus_Syndrome Support and education for families and professionals. Includes abstracts, brochures, glossary, links and newsletters.
Other resource N79 Pediatric Oncallhttp://www.pediatriconcall.com/fordoctor/casereports/Proteus_syndrome.asp Pediatric OncallTop/Health/Conditions_and_Diseases/Genetic_Disorders/Proteus_Syndrome Find a proteus syndrome case report, including CXR and radiographs.
Other resource N80 National Library of Medicinehttp://www.nlm.nih.gov/cgi/jablonski/syndrome_cgi?term=Pallister-Killian+syndrome&field=name National Library of MedicineTop/Health/Conditions_and_Diseases/Genetic_Disorders/Pallister_Killian_Mosaic_Syndrome The synonyms of Killian syndrome, a summary and a list of major features.

link to main page of directory

Back to Art Vernissage