| Cherubs |
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| http://www.cherubs-cdh.org |
| A non-profit support group for the families and medical care providers of children and adults born w ith Congenital Diaphragmatic Hernia. |
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| (SLD : cherubs-cdh.org) |
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| National Organization for Rare Disorders, Inc. |
| Disease Information from NORD, National Organization for Rare Disorders, Inc. |
| http://www.rarediseases.org/ |
| Information about NORD, its programs, special events and the variety of services offered. Includes a rare disease, organization and orphan drug database. Diseases are listed alphabetically for easy se arching. |
| National Organization for Rare Disorders is dedicated to helping people with rare, orphan diseases. Rarediseases.org contains information on the prevention, treatment and cure of rare diseases. |
| rare, disease, disorder, syndrome, diseases, orphan, drugs, rare disorders, rare diseases, orphan di seases |
| database, member, organization, disease, diseases, report, reports, organizational, events, organiza tions, organizations, patient, washington, office, graduate, college, lawrence, student, smaller, si milar, conducted, having, released, committee, disease, families, patients, affects, update, resourc e, center, nonprofit, events, helpful, advice, organization, growing, establishing, upcoming, import ant, requests, information, congressional, proposals, meetings, scientific, conferences, findings, c overed, currently, current |
rarediseases.org - rank der domain 516155 (204296 in US)
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| Human Growth Foundation |
| Human Growth Foundation - Helping Children & Adults with Disorders of Growth & Growth Hormone |
| http://www.hgfound.org/ |
| Information about growth-related disorders through education, research, and advocacy. Member driven organization. |
| helping adults and parents of children with disorders of growth and growth hormone through research, education, support, and advocacy |
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| family, myimages, images, sidebar, growth, growth, information, hormone, medical, hormone, deficienc y, through, children, discussion, children, website, corner, access, foundation, translation, webmas ter, adults, random, disorders, button, related, researchers, posted, forums, insurance, adults, sep tember, homepage, support, persons, different, treatment, issues, endocrine, pediatric, booklet, med ical, navigation, member, contact, language, website, available, concerning, trials, resources |
| (SLD : hgfound.org) |
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| Health/Conditions_and_Diseases/Rare_Disorders |
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| Health/Conditions_and_Diseases/Rare_Disorders |
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| Contact a Family |
| Contact a Family - for families with disabled children: information on rare syndromes and disorders |
| http://www.cafamily.org.uk |
| Information about this organization as well as the CaF directory of specific conditions and rare dis orders. Also details about the Rare Disorders Alliance - UK. |
| Contact a Family is a UK charity for families with disabled children. We offer information on specif ic conditions and rare disorders. |
| medical conditions information,chromosomes disorders,medical symptoms,a list of inherited diseases,m edical dictionary,pregnancy,medical info,health,parent,medical information,human genetics,rare disea ses,kids,metabolic syndrome,information about medical conditions,children physical disabilities,medi cal diagnosis,special education inclusion,grants for disabled children,health information,statement of special educational needs uk,inherited genetic diseases,disabled children,children with disabilit ies,disabled,children,medical condition,medical,medicine,disable,disability,illness,life-threatening ,paediatric,pediatric,birth,parents,child,sibling,caring,carer,care,support,self-help,therapy,Contac t a Family Directory,CaF,contact,family,families,unique,special needs,Special Educational Needs,SEN, inclusion,diagnosis,undiagnosed,diagnose,hospital,hospice,doctor,patient,condition,genetic condition ,genes,genetic,defect,inherited,inheritance,hereditary,autosomal,dominant,recessive,x-linked,mitocho ndrial,metabolic conditi |
| contact, family, families, disabled, children, information, charity, support, parents, cafamily, sto ries, gajshost, document, publications, advice, medical, conditions, search, registered, charity, ex ternal, helpline, behavior, copyright, pagetracker, disorders, london, source, 6377723, awards, priv acy, equality, advice, registered, statement, trackpageview, information, disabilities, details, gro ups, scotland, complies, honcode, standard, trustworthy, health, unescape, location, 3cscript, verif y, analytics |
cafamily.org.uk - rank der domain 904825 (5445 in UK)
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| Fibrous Dysplasia Support Online |
| Fibrous Dysplasia Support - new home page at fdsol.org |
| http://members.cox.net/fdsupport/index.html |
| For those seeking support and information concerning the rare bone diseases: fibrous dysplasia, McCu ne Albright Syndrome and Cherubism. |
| Site is dedicated to providing support for individuals and families seeking answers on Fibrous Dyspl asia, a rare bone disease that effects children. |
| monostotic, fibrous, dysplasia, fibrous dysplasia, polyostotic, McCune Albright Syndrome, cherubism, email, prayer, help, aredia, pamidronate, support group, support,
bone, disease, surgery, drug, doc tor, pain, mandible, facial, hip, leg, arm, rib, skull, neck, spine, precocious puberty, puberty, ho spital, specialist, jaw, rare, disfigure, treatment, diagnosis, links, biopsie,
cyst, lesion, drug, bisphosphonate, physician, referral, orthopaedic, cranial, facial, tumor |
| dysplasia, registered, fibrous, address, person, register, please, provide, location, currently, tha nks, should, please, following, support, members, looking, registered, members |
cox.net - rank der domain 1189 (503 in US)
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| Kindler Syndrome |
| KINDLER SYNDROME |
| http://digilander.libero.it/camdic/KINDLER.html |
| An article and case study of this rare disease. Includes links. |
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| syndrome, kindler |
libero.it - rank der domain 278 (6 in IT)
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| Office of Rare Diseases |
| NIH Office of Rare Diseases Research (ORDR) |
| http://rarediseases.info.nih.gov/ |
| Information on more than 6000 rare diseases, including current research, publications from scientifi c and medical journals, completed research, ongoing studies, and patient support groups. |
| The Office of Rare Diseases Research (ORDR) at the National Institutes of Health (NIH)
; coordinates research and information on rare diseases at th e NIH and for the
rare diseases community. The ORDR Web site provides information for patients and
& #9; their families with rare diseases and about NIH- and ORDR-sponsored biomedical
research and scientific conferences |
| ORD, Office of Rare Diseases, ORDR, Office of Rare Diseases Research |
| diseases, research, information, genetic, clinical, national, disease, office, contact, institutes, health, genetics, center, program, trials, network, report, develop, online, activities, information , neglected, scientific, conference, medical, syndrome, testing, search, brochure, transfer, undiagn osed, technology, patient, registry, biospecimen, children, newsletter, edition, charity, request, a irlift, google, reports, biennial, publications, family, edmond, registration, annual, centro, acces sing |
nih.gov - rank der domain 375 (172 in US)
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| Information Centre for Rare Diseases and Orphan Drugs |
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| http://www.raredis.org/modules/news/ |
| Offers an Internet portal. Includes news, forums, rare disease and orphan drug information and regis tration forms |
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raredis.org - rank der domain 656474 (267360 in US)
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| Health/Conditions_and_Diseases/Rare_Disorders |
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| Health/Conditions_and_Diseases/Rare_Disorders |
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| European Organisation for Rare Diseases |
| www.eurordis.org | The Voice of Rare Disease Patients in Europe |
| http://www.eurordis.org/ |
| Alliance of patient associations dedicated to improving the quality of life of all people living wit h rare diseases in Europe. |
| EURORDIS - Rare Diseases Europe, is a non-governmental patient-driven alliance of rare disease patie nt organisations representing more than 400 rare diseases patient organisations in over 40 countries . We are dedicated to improving the quality of life of all people living with rare diseases in Euro pe |
| rare disease, maladies rares, genetic disease, orphan drug |
| european, diseases, conference, disease, eurordis, patient, disease, message, function, document, or phan, policy, patients, responsexml, diseases, newsletter, server, living, documents, guidance, euro plan, patients, events, organisations, unable, supply, fabrazyme, genzyme, agency, winning, manager, receive, resources, medicines, mother, osteogenesis, countries, groups, krakow, newsletter, recent, gajshost, success, national, response, training, processxml, addclass, content, corner, aniridia |
eurordis.org - rank der domain 822385 (1531 in IE)
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