WEB sites: a powerful information and reference search engine bs00019_.wmf (5984 byte)

Many WEB sites deal with rare diseases and "orphan" drugs: the most important are the French one (Orphanet), the American one, and among Italian websites, those of the Health Ministry, the Italian National Institute of Health, and Mario Negri Institute.

In Italy, there are several Associations that have the function of drawing public opinion and authorities' attention on rare diseases' problem.

Generally, the aims of rare diseases' associations are: orphan diseases information's collection and spreading to patients and their families and to physicians; research spurring; development of a specific legislation on care and drugs availability enhancing; and community consciousness promoting through mass media.

The Italian Ministry of Health website on rare diseases includes:

  1. "forum". Aid space, filling up a proper form, everybody can send one's own comments, contributions and suggestions directly to the Ministry;

  2. "documentation". It is a synthesis of the draft regulation on the national network creation for rare diseases, free of charge for the Italian health system;

  3. "links". It is a list of national and international web-sites that deal with rare diseases.

The American National Organisation for Rare Disorder is an institution made by 140 organizations no-profit; it is involved in rare diseases' and disability's fields, supported by non governmental donations. Such organization has a website containing:

  1. a free-consultation database of rare diseases with information on more than 1,400 pathologies, on national and international researches, on the support groups (umbrella organization);

  2. database of orphan drugs with details on their action mechanism and their availability.

The Rare Diseases American Office (part of the National Institute of Health), supplies information on more than 2,117 rare pathologies, including current searches, scientific publications and support groups. Their website includes:

  1. the diseases' list and information on each pathology through these links:

  2. searches and clinical trials;

  3. humanitarian support organisations;

  4. information on patients' journey and lodging;

  5. information on the genetics of such diseases;

  6. Progresses in the researches and calendar of the congresses.

Orphanet Project is a plan proposed in 1995 by the Orphan Drug Commission of the Department of the French Health Ministry, founded in 1997 from two French governmental agencies: the D.G.S. (Direction Générale de Santé) and INSERM (National Institute of the Health and the Search).

They aim at creating:

  1. A database of information on a particular disease, with a description of clinical and biological signs. For every single disease, they give: definition, research plans, specialised practices, specialised laboratories for the diagnosis, research laboratories, patients associations, national and international agencies, similar or complementary database, bibliographical references, treatment, used drugs, experimented drugs. Such database is available in English and French;

  2. A list of rare diseases (approximately 5,000). For each disease there is a small resume of the main clinical features, the synonyms or the possible inclusions in other pathologies;

  3. An argument forum, in which it is possible to receive answers to questions on rare diseases.