International conferences on rare diseases: Initiatives in commitment, patient care and connections

Medical Journal of Australia

Volumn 187, Issue 2, 2007, Pages 74-76

  Knight, Andrew W ^a   Taruscio, Domenica ^b  

^a WentWest Ltd   (Australia)

^b ISTITUTO SUPERIORE DI SANITÀ   (Italy)

Author keywords

[No Author keywords available]

Indexed keywords

AUSTRALIA; CONFERENCE PAPER; CONSULTATION; DE LANGE SYNDROME; EUROPE; EVIDENCE BASED MEDICINE; GENERAL PRACTICE; GENERAL PRACTITIONER; GOVERNMENT; HUMAN; MYASTHENIA GRAVIS; NEUROFIBROMATOSIS; PATIENT CARE; PRADER WILLI SYNDROME; PRIMARY MEDICAL CARE; PUBLIC HEALTH; RARE DISEASE; RETT SYNDROME; UNITED STATES;

EID: 34547464168     PISSN: 0025729X     EISSN: None     Source Type: Journal    
DOI: 10.5694/j.1326-5377.2007.tb01143.x     Document Type: Conference Paper

References (8)

1. Knight AW, Senior TP. The common problem of rare disease in general practice. Med J Aust 2006; 185: 82-83.
2. National Organization for Rare Disorders. About NORD. http://www.rare-diseases.org/info/about.html (accessed Jun 2007).
3. Eurordis. European Organisation for Rare Diseases. EurordisCare2: survey of diagnostic delays, 8 diseases, Europe (2004). EurordisCare 2: Survey of the delay in diagnosis for 8 rare diseases in Europe. http://www.eurordis.org/article.php3?id_article=454 (accessed Jun 2007).
4. National Institutes of Health. Office of Rare Diseases. About ORD. http://ord.aspensys.com/html/resources/about_ord.html (accessed Jun 2007).
5. Europa (the European Union Online). Directorate General Health and Consumer Protection. Public Health. Threats to health. Non-communicable diseases. Rare diseases. http://ec.europa.eu/health/ph_threats/non-com/ rare_diseases_en.htm (accessed Jun 2007).
6. Istituto Superiore di Sanità [Institute of Public Health]. Centro Nazionale Malattie Rare [National Centre for Rare Diseases] [website]. http://www.iss.it/cnmr (accessed Jun 2007).
7. Taruscio D, Ido MS, Daina E, Schieppati A. Tackling-the problem of rare diseases in public health: the Italian approach. Community Genet 2003; 6:123-124.
8. Ågrenska [website]. http://www.agrenska.se (accessed Jun 2007).