MOVING TOWARDS AN INTEGRAL APPROACH TO PATIENTS WITH RARE DISEASES- AN INTERNATIONAL PERSPECTIVE

Author(s)

Camila Quirland, DPharm, MSc, Universidad de Chile, Santiago, Chile; Diego Rosselli, MD, Pontificia Universidad Javeriana, Bogota, Colombia

Presentation Documents

DESCRIPTION: Worldwide evidence suggests that patients with rare diseases require a different diagnostic and therapeutic approach. Conditions with very low prevalence are not usually either in the research or the political agenda, and most health providers are not prepared to deal with unusual conditions. Legislation on orphan drugs, incentives to research in rare disorders, and the development of a wide network of information systems are some of the answers that developing countries have proposed. Latin American countries have also had some advances in dealing with rare diseases. In this forum, Brazil, Chile and Colombia present recent advances in different aspects of rare disease management ranging from centralized registries, efforts in screening and early diagnosis, patient association empowerment, and drug price regulation, to different approaches in the process of drug approval or of funding sources.

Conference/Value in Health Info

2016-05, ISPOR 2016, Washington DC, USA

Code

F7

Topic

Health Service Delivery & Process of Care, Specific Diseases & Conditions

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