Health policy and legal regulations concerning the functioning in society of individuals burdened with Huntington’s disease and other rare diseases
Journal Title: Annals of Agricultural and Environmental Medicine - Year 2013, Vol 7, Issue 1
Abstract
In the European Union, 5,000–8,000 distinct rare diseases affect up to 6% of the total EU population; therefore, care of these patients and the possibilities to optimize this care become increasingly more clearly perceived in health policy. Among these rare and ultra-rare diseases, Huntington’s disease (HD) deserves attention in the context of exercising health care over patients suffering from this disease, access to medications, rehabilitation, etc. Legal regulations are being developed concerning the functioning in society of individuals burdened with rare and ultra-rare diseases – beginning at the EU level. Health education pertaining to this scope of problems is necessary, as well as providing society with information concerning health and social problems encountered by patients with rare diseases. In this context, the mass media play an important role. Systemic changes are desirable, including the regulations, and for this reason, a decisive legislative initiative originating from, e.g. associations of patients suffering from rare diseases, may lead to the changes in regulations to the benefit of patients with such diseases, including HD. Unfortunately, to-date, the legislator has not attached much importance to this problem.
Authors and Affiliations
Daniel Zielonka, Jerzy T. Marcinkowski, Aneta Klimberg
Keywords
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