Huntington’s Disease and Support Systems for Patients and Families: AICH-Roma Onlus Website. (Abstract/Poster in atti di convegno)

Type
Label
  • Huntington’s Disease and Support Systems for Patients and Families: AICH-Roma Onlus Website. (Abstract/Poster in atti di convegno) (literal)
Anno
  • 2009-01-01T00:00:00+01:00 (literal)
Alternative label
  • Zinzi P., Carriero I., Cordi A., Jacopini G. (2009)
    Huntington’s Disease and Support Systems for Patients and Families: AICH-Roma Onlus Website.
    in International Conference on Rare Diseases & Orphan Drugs– ICORD Meeting, Roma
    (literal)
Http://www.cnr.it/ontology/cnr/pubblicazioni.owl#autori
  • Zinzi P., Carriero I., Cordi A., Jacopini G. (literal)
Http://www.cnr.it/ontology/cnr/pubblicazioni.owl#altreInformazioni
  • HUNTINGTON’S DISEASE AND SUPPORT SYSTEMS FOR PATIENTS AND FAMILIES: AICH-ROMA ONLUS WEBSITE. Paola Zinzi (1-2), Immacolata Carriero (3), Aurelio Cordi (3), Gioia Jacopini (1) 1 ISTC National Research Council, Rome (Italy ) 2 INMM National Research Council , Rome (Italy) 3 AICH- Roma Onlus, Rome (Italy) Huntington's disease (HD) is a rare genetic neurodegenerative disease characterized by movement disorders, changes in mood and behavior, and progressive cognitive decline with currently no definite cure. At a relatively young age (mean age at onset is 30-40 years), affected individuals slowly loose control over physical and mental functions needed to perform the activities of daily living. Their life turns into a long term chronic condition for 15-20 years. The occurrence of HD is estimated at 5-10 per 100.000 inhabitants corresponding to 4.000 patients in Italy. The heavy burden of HD, and the autosomic dominant heritage (each child of an affected patient has 50% probability to develop himself the disease) affect the whole family involved. Since 1989, the HD Association of Rome (AICH-Roma Onlus) is a national lay organization of individuals and families affected by HD. It has approximately 500 associates and 15 active volunteers including several health professionals and researchers. The AICH-Rome website (www.aichroma.com) has become the main media of the association, increasing its contacts and activities since the initial 6 visits per month in 1999 to current 1.500-2.000. It’s an interactive website frequently updated, providing information on HD and about the Association, answers to FAQ, a free of charge weekly newsletter sent by e-mail to 900 subscribers, an essential bibliography for professionals and students, archives with past issues of the association quarterly periodical since 1995, links to the main websites concerning HD associations in the world, and news from handicap world. The web site also offers a permanent Discussion Forum open to people involved in HD as well as to professionals interested in the disease (moderators are the webmaster himself Mr. Aurelio Cordi and CNR researchers who reply to technical questions). Registered users in the forum are 795, 981 messages distributed in 340 topics. Thousands private mails in these 9 years received individualised answer from webmaster and/or medical experts collaborating with the association. The HON CODE (Health on the Net) acknowledging the respect of conduct principles for medical websites was obtained in 2004 and renewed with regular evaluation every year. Since 2009 AICH is either on Facebook. (literal)
Http://www.cnr.it/ontology/cnr/pubblicazioni.owl#note
  • 23-25 February 2009 (literal)
Http://www.cnr.it/ontology/cnr/pubblicazioni.owl#affiliazioni
  • ISTC/CNR e AICH-Roma Onlus (literal)
Titolo
  • Huntington’s Disease and Support Systems for Patients and Families: AICH-Roma Onlus Website. (literal)
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