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Rare Diseases Working Group

Rare Diseases Working Group. Luzern, 24 September 2010. Background. Rare diseases one of the most peculiar topics of Internal Medicine (multi-systemic and complex)

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Rare Diseases Working Group

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  1. Rare Diseases Working Group Luzern, 24 September 2010

  2. Background Rare diseases • one of the most peculiar topics of Internal Medicine (multi-systemic and complex) • characterized by a broad diversity of disorders and symptoms that vary not only from disease to disease, but also from patient to patient suffering from the same disease. • patient mobility across European borders is a reality for people living with rare diseases.

  3. There is a specific need of a common strategy for those diseases in Europe • EFIM could play a major role not only from the clinical and research standpoints, but also with regards to more political issues.

  4. Specific primary aims of the EFIM WG • To gather data on rare disease in European Internal Medicine departments • To gain and share scientific knowledge about all rare diseases • To increase the awareness on rare diseases among Internists across Europe • To imagine and create specific curricular tracks on rare diseases for medical students and Internal Medicine residents • To implement the development of European research projects on molecular and pathophysiologic aspects of rare disease • To coordinate European multicentric clinical trials

  5. General and future aims of the Working Group • To implement the comprehensive approach which is peculiar to Internal Medicine to rare diseases • To support the development of appropriate EU public health policies • To increase international cooperation in scientific research among EFIM members • To coordinate studies aimed at developing new diagnostic and therapeutic procedures • To support campaign aimed at raising public awareness of these disease in the EFIM Countries • To provide comprehensive quality information to the rare disease community

  6. First possible proposed activities • short on-line survey on the prevalence of rare diseases in Internal Medicine department across Europe • on-line study aimed at evaluating the ability of Internists across Europe to recognize specific rare disease by means of the analysis of simple patient vignettes

  7. Foreseen collaborations among EFIM • Young Internist subcommittee • Political issues working group • Competencies working group

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