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Links ai maggiori siti medici e della ricerca 

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Aggiornato al 30 luglio 2005

American Academy of Neurology
The American Academy of Neurology (AAN) è un'organizzazione professionale che rappresenta i neurologi a livello mondiale. Questo sito fornisce le informazioni sia ai professionisti medici che al pubblico. E' stata sviluppata  dalla American Academy of Neurology "Una guida di informazioni al paziente" disponibile sotto ""Neurological Conditions" ed orientata al paziente per aiutare i medici ed altri ad individuare con i materiali ed i servizi per gli individui con disturbi neurologici.

American Medical Association (AMA)
The American Medical Association (AMA) provides a variety of information on health and medical resources which include: name, location and specialty of over 650,000 physicians licensed to practice in the U.S., scientific journals and news, medical science and education, information about the AMA and documents of public interest, employment opportunities, membership and constituency groups, as well as many links to other medical sites.

American Occupational Therapy Association
The American Occupational Therapy Association (AOTA) has launched an online directory designed to help consumers locate occupational therapists in their area. The Association's sito web offers a new feature called "Find an Occupational Therapist," which permits individuals to search for an occupational therapist by specialty or locality. Over 90 specialty areas of practice are represented in the directory.

Athena Diagnostics, Inc.
 Athena Diagnostics  è un laboratorio di riferimento dedicato allo sviluppo ed alla commercializzazione di esami diagnostici per disturbi neurologici. La competenza include la diagnosi nelle aree dei: disturbi periferici nervosi, disturbi neurogenetici, malattia del Alzheimer, sindromi paraneoplastiche, disturbi del movimento, disturbi neuromuscolari, ed atassia. Il sito fornisce un interattivo, catalogo reperibile dei servizi diagnostici per i disturbi neurologici, materiali educativi, e risorse disponibili della Athena Diagnostics.

Baylor College of Medicine (Neuromuscular)
This site includes information on Baylor College of Medicine departmental clinics, faculty, training programs, research on neuromuscular diseases, neurology news, a comprehensive index, and the MDA/ALS Research and Clinical Center at http://www.bcm.tmc.edu/neurol/struct/als/als1.html.

Center for Human Genetics (Boston University)
The Center for Human Genetics provides the following services: routine and specialized chromosome studies; prenatal diagnosis of genetic disorders; DNA analysis for diagnosis and carrier detection; maternal serum screening for Down's syndrome and neural tube defects; biochemical genetic studies; cancer cytogenetics; paternity testing using DNA analysis and genetic counseling and birth defects evaluation.

CenterWatch -- Clinical Trials Listing Service
CenterWatch è un elenco internazionale delle sperimentazioni  cliniche di ricerca. Questo elenco può essere usato per cercare le sperimentazioni cliniche, trovare le informazioni sui medici e sui centri medici che realizzano la ricerca clinica, e per conoscere le terapie farmacologiche recentemente approvate dal  Food and Drug Administration. E' disponibile un servizio di notifica tramite e-mail per informare sulle future assegnazioni in una particolare zona terapeutica.

Chicago, The University of, Department of Neurology
The site of the Department of Neurology at The University of Chicago provides information on clinical drug trials, clinics, faculty, clinical and research laboratories and links to other neurology home pages.

Children's Hospital, Boston
The Neuromuscular Program began in 1978. The sito web includes information on neuromuscular diseases and DMD genetics.

Columbia University, The Eleanor and Lou Gehrig MDA/ALS Center
This site offers information on the MDA/ALS Center services, patient care and education, activities and research updates.

Council of Regional Networks for Genetic Services (CORN)
The Council of Regional Networks for Genetic Services (CORN) provides a forum for dialogue and national coordination among the ten regional networks representing all fifty states, the District of Columbia, Puerto Rico, and the Virgin Islands. CORN brings together network representatives to encourage and facilitate communication and planning for genetic services as well as addressing national public health priorities in genetics. CORN membership includes representatives from each of the regional genetic networks, national sickle cell disease programs, and the Alliance of Genetic Support Groups, and consists of genetic services providers, public health officials, consumers, and health care professionals.

Dana BrainWeb: Brain Diseases and Disorders
The Dana BrainWeb guide comes from the Dana Alliance for Brain Initiatives, an independent non-profit organization of più than 175 pre-eminent neuroscientists, including six Nobel laureates, dedicated to advancing education about the personal and public benefits of brain research. The Dana BrainWeb is the result of a search of hundreds of sites to select, for each of 23 common brain diseases and disorders, up to four sites that provide validated current information useful for the lay person. For neuromuscular disorders see the section on amyotrophic lateral sclerosis (ALS).

DisabilityInfo.gov is the comprehensive United States Federal sito web of disability-related government resources. Subjects covered are employment, education, housing, transportation, health, income support, technology, community life and civil rights.

Duke University Medical Center
The Duke University Medical Center Section on Medical Genetics includes information on how to participate in genetic studies. Descriptions of each of the diseases under study as well as current research efforts, support organizations and recent references are included.

European Neuromuscular Centre
European Neuromuscular Centre (ENMC) is a partner in the development of collaborative research activities. It ensures financial support for ensuing workshops, offers organizational support through its secretariat in Baarn, The Netherlands, and acts as a clearinghouse for relevant research related data. ENMC has been able to stimulate and facilitate top-level scientific collaboration concerning many neuromuscular diseases such as spinal muscular atrophies, Duchenne muscular dystrophy, motor neurone disease, limb-girdle dystrophies and others.

Family Village
The purpose of Family Village is to integrate information, resources, and communication opportunities on the Internet for persons with mental retardation and other disabilities, their families, and those that provide them services and supports. Additions and updates are made on a weekly basis.

Federal Government Agencies
Provides opportunity for keyword search of federal agencies.

Esami genetici-GeneClinics
Esami genetici-GeneClinics is a knowledge base of expert-authored, up-to-date information relating genetic testing to the diagnosis, management and counseling of individuals and families with inherited disorders. The International Clinic Directory is intended to help patients and clinicians in the U.S. who need to refer family members living elsewhere to a clinic located near them. It may also serve the same purpose for clinicians and patients in other countries. GeneClinics disease profiles are called GeneReviews or Reviews.

Genetic Alliance
Genetic Alliance is a non-profit organization dedicated to helping individuals and families who have genetic disorders. A toll-free helpline is available as a resource for consumers and professionals who are looking for genetic support groups and genetic services.

GovBenefits is a sito web designed as a one-stop resource for Americans to
learn if they are eligible to receive government benefits. This sito web
allows a user to answer a short series of simple, yes-no questions, then
returns a list of federal benefit programs for which he or she may be
eligible. The online screening tool is free, anonymous and completely
confidential. Information that could be used to identify the user is not

The Harvard Neuromuscular Disease Project
The Harvard Neuromuscular Disease Project focuses collaborative research projects on the following muscular dystrophies: limb-girdle, Duchenne/Becker, facioscapulohumeral, myotonic, Miyoshi, myotubular and centronuclear. The site also features opportunities for research paticipation; useful links for researchers, patients and families and healthcare providers; as well as answers to frequently asked questions

"Healthfinder" is a gateway consumer health and human services information sito web from the United States government. This site is intended to lead users to selected online publications and medical journals, clearinghouses, databases, sito webs, and support and self-help groups, as well as the government agencies and not-for-profit organizations that produce reliable information for the public. The aim is to provide information that can help the consumer make better choices about health and human services needs for self and family.

The new easy-to-use Spanish-language consumer resource available at www.healthfinder.gov/espanol offers over 300 topics from 70 government agencies and nonprofit organizations. A unique feature of healthfinder® español is the ease with which users of the site can switch between Spanish and English versions of the same information. English-speaking family members or health professionals can use this feature to search in English for information to share with Spanish-speaking relatives or patients.

Institute for Human Gene Therapy (IHGT)
L' Institute for Human Gene Therapy (IHGT), alla University of Pennsylvania a Filadelfia, unisce la ricerca scientifica e la clinica di base, la cura paziente, e l'insegnamento dello sviluppo delle tecnologie di trasferimento genetico per il trattamento della malattia umana. Questo sito fornisce le informazioni aggiornate sulla terapia genetica, introduce i vari modi di ricerca coinvolti, ed ha vaste pagine di collegamenti per chiunque cerchi maggiori informazioni sulla terapia genetica.

Italian MuscleNet
The regional Neuromuscular Center Department of Neurological and Psychiatric Sciences at the University of Padova, Italy website contains clinical information and diagnostic criteria, epidemiology of inherited neuromuscular disorders, international neuromuscular patients associazioni and support groups and current research on muscle and neuromuscular disorders. 

 l reparto concentr regionale di Neuromuscular delle scienze
neurologiche e psichiatriche all'università di Padova, Il sito web dell'Italia contiene le informazioni cliniche ed i test di
verifica diagnostici, epidemiologia dei disturbi neuromuscular ereditati, associazioni dei pazienti e gruppi neuromuscular internazionali di
sostegno e ricerca corrente sul muscolo e sui disturbi neuromuscular.

Life Challenges CyberCenter
Life Challenges is a non-profit online resource center offering people support and hope while they face challenges, crises, change, unexpected events and turning points in their lives. The emphasis is on using challenges as opportunities for growth and transformation in healing our minds and bodies. The site includes articles, personal stories and self-help tools.

Miami, University of, ALS Clinical and Research Center (Kessenich Family MDA ALS Center)
The University of Miami Kessenich Family MDA ALS Center and ALS Clinical and Research Center sito web provides a body of information about amyotrophic lateral sclerosis (ALS), clinical care centers, local chapters and support groups, equipment, and multi-dimensional support to patients with ALS and their families from the time of diagnosis throughout the course of the disease, while conducting advanced research into the cause of and cure for ALS.

National Health Information Center
The National Health Information Center (NHIC) is a health information referral service. NHIC puts health professionals and consumers who have health questions in touch with those organizations that are best able to provide answers. NHIC was established in 1979 by the Office of Disease Prevention and Health Promotion (ODPHP), Office of Public Health and Science, Office of the Secretary, U.S. Department of Health and Human Services. Included are announcements of new or upcoming activities; health information resource database, publications, Partnerships for Networked Consumer Health Information conferences, and the Department of Health and Human Services home page.

National Center for the Dissemination of Disability Research (NCDDR)
Disseminates research on employment outcomes, health and function, technology, independent living and community integration, associated disability, knowledge dissemination and utilization, ADA technical assistance, etc.

National Institute of Health (NIH) Clinical Research Studies
A collection of research studies being conducted at the NIH Clinical Center. Searches can be conducted by diagnosis, institute of primary investigator or other key words or phrases.

National Library of Medicine (NML)

La più grande biblioteca biomedica del mondo che fornisce l'accesso a
MEDLINE, altri basi di dati e servizi Internet, materiali storici, programmi di ricerca, addestramento, esposizioni e concessioni dei finanziamenti alla ricerca.

  • PubMed/MEDLINE - http://pubmed.gov
    Oltre 300 milioni di ricerche sono condotte ogni anno su PubMed. È il maggior strumento di informazioni on-line per il professionista del settore medico-sanitario.

  • MEDLINEplus - http://medlineplus.gov/
    MEDLINEplus è la risorsa a libero accesso alle informazioni della National Library of Medicine, National Institutes of Health. I professionisti del settore medico-sanitario ed i consumatori possono attingere ad essa per le informazioni che sono autorevoli e aggiornate. MEDLINEplus ha vaste informazioni dalla National Library of Medicine, National Institutes of Health ed altri fonti collegate su oltre 500 malattie e condizioni. Ci sono inoltre liste degli ospedali e dei medici, un'enciclopedia medica e dizionari, le informazioni sulla salute in lingua spagnola, vaste informazioni sulla prescrizione e sui farmaci non prescrivibili, notizie aggiornate e link a migliaia di sperimentazioni cliniche. MEDLINEplus è aggiornato giornalmente. Non c'è pubblicità su questo sito, né MEDLINEplus promuove l'azienda o il prodotto.

  • ClinicalTrials.gov - http://clinicaltrials.gov/
    ClinicalTrials.gov è un database omni-comprensivo delle sperimentazioni cliniche negli Stati Uniti.

National Institute of Neurological Disorders and Stroke (NINDS)
Provides a guide to voluntary health organizations according to disease or disorder. The intent is to provide information useful to individuals nationally, and for this reason many local groups have not been included that offer valuable assistance to patients and their families in individual states or cities.

National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders, Inc. (NORD) is a not-for-profit federation of voluntary health organizations dedicated to helping people with rare orphan diseases and assisting the organizations that service them. Through its Rare Disease Database (RDB), NORD provides reports in understandable, layperson's terminology on più than 1,000 rare disorders.

National Rehabilitation Information Center
Il National Rehabilitation Information Center (NARIC) è una biblioteca e un centro d'informazione sull'inabilità e sulla riabilitazione. NARIC mette a disposizione i risultati dei progetti di ricerca finanziati con fondi governativi e mantiene una collezione di documenti aggiornata mensilmente di articoli pubblicati e di libri.

The Neuromuscular Center
Institute for Exercise and Environmental Medicine
ll  Neuromuscular Center (NMC) è una delle tre divisioni importanti dell' Institute for Exercise and Environmental Medicine (IEEM), una clinica ed un istituto di ricerca promossi dal Presbyterian Hospital di Dallas e dalla University of Texas Southwestern Medical Center a Dallas. I membri del personale medico uniscono le loro conoscenze nella scienza di base con la ricerca clinica per applicare le scoperte scientifiche alle patologie umane che coinvolgono le capacità di esercizio fisico. Il NMC è dedicato alla valutazione ed alla cura delle persone colpite da  dolore muscolare anormale, affaticamento, e debolezza durante l'esercizio.

Northeast Passage
Northeast Passage serves individuals with disabilities, their friends, families and communities to explore health, wellness, access, sports and recreation. Northeast Passage works to create an environment where individuals with disabilities can recreate with the same freedom of choice and independence as their able-bodied peers. Mission is accomplished through education, problem solving, and the creation of opportunities. Northeast Passage works in cooperation with other programs to create a strong network of accessible recreation, and the site includes links to a variety of programs and resources.

OMIM (Online Mendelian Inheritance in Man)
 Questo database è un catalogo dei geni umani e delle malattie genetiche. La database contiene le informazioni testuali, immagini, e le informazioni di riferimento. Inoltre fornisce molti collegamenti al National Center for Biological Information's (NCBI) Entrez database di MEDLINE degli articoli di MEDLINE e delle informazioni di sequenza. OMIM è usato dai medici e da altri professionisti interessati dai disturbi genetici, dai ricercatori della genetica, e dagli allievi avanzati nella scienza e nella medicina. La database di GenBank  all'indirizzo   http://www.ncbi.nlm.nih.gov/  fornisce le informazioni genetiche, le informazioni sul genoma e ed il sequenziamento genico cliccando su  "Overwiew" sotto "Genbank Sequence Database".

Rehabilitation Research and Training Center in Neuromuscular Diseases (RRTC/NMD)
REHABinfo Network - Neuromuscular Diseases Information Clearinghouse.

Seeks to improve the lives of individuals with neuromuscular diseases by developing and evaluating new strategies that address lifelong needs for research-based medical care and counseling, psychosocial well-being, education, and independent living. Disseminates disability-related information through the sito web: including a neuromuscular disease information center, medical and rehabilitation services, gene testing, clinical studies and many others.

Rochester, University of
http://www.urmc.rochester.edu/smd/neuro/ The site of the Department of Neurology at the University of Rochester Medical Center provides information on faculty, training programs, clinics and neuromuscular research, both basic research and clinical trials.

Washington University (St. Louis) School of Medicine
Neuromuscular Disease Center

The Washington University School of Medicine Neuromuscular Disease Center contains information on neuromuscular, spinal and cerebral disorders and syndromes, guidelines for neuromuscular evaluation, autoantibody testing and patient information.

World Federation of Neurology
The World Federation of Neurology Amyotrophic Lateral Sclerosis (WNF/ALS) sito web is sponsored by the World Federation of Neurology to link researchers and clinicians worldwide. The site contains information about ALS research and treatments, current clinical therapeutic trials, conferences and meetings, MDA/ALS research and clinical centers and other resources of interest to researchers and patients.

Yale Neuromuscular MDA/ALS Program
 ll  Yale Neuromuscular Program fornisce i servizi primari e di documentazione per tutti le malattie del sistema nervoso periferico e muscolari e un centro clinico di ricerca della MDA. Esso è specializzato nella SLA,  miastenia grave, miopatia (polimyositi, dermatomiositi, miosite con corpi inclusi), neuropatia (CIDP, CMT, Guillain-Barré, neuropatia diabetica, non diagnosticate), distrofia muscolare (FSH, Duchenne, Becker, dei cingoli,  miotonica, oculofaringeale) e disturbi relativi.

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