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Items in this list may be obtained from the sources cited. Contact information reflects the most current data about the source that has been provided to the MCH Digital Library.

Displaying records 1 through 2 (2 total).

Dijkstra H, Poot E, Wilczek I, eds. 1998. Biomedical research and orphan medicinal products: A roundtable conference organized by European Platform for Patients' Organisations, Science, and Industry, Brussels, 23 September 1997. [Brussels, Belgium]: European Platform for Patient's Organizations, Science and Industry, 122 pp.

Annotation: This book provide the texts of the presentations at a conference on biomedical research and orphan medicinal products. Section one addresses rare diseases. Section two discusses related research and development. Section three discusses legislation regarding orphan medicinal products. Section four discusses the related ethical aspects. And section five provides the related discussion of the conference.

Keywords: Conferences, Ethics, Europe, Legislation, Orphan drugs, Pharmaceuticals, Rare diseases, Research

National Commission on Orphan Diseases. 1989. Report of the National Commission on Orphan Diseases. Washington, DC:, U.S. Department of Health and Human Services Office of the Assistant Secretary for Health, 106 pp.

Annotation: This report presents a blueprint to guide United States' policies regarding rare diseases. It details what the Commission recommends the private and public sectors should do to meet the needs of the millions of patients with rare diseases. The National Commission on Rare Diseases was established by Congress in August 1985 to assess the activities relating to various aspects of rare diseases. The assessed activities include basic and clinical research, the development and dissemination of information to health professionals and the public, availability of health insurance and reimbursement mechanisms for patients with rare diseases, and the discovery and development of orphan products. A ten-page executive summary and recommendations is also available.

Keywords: Child health, Chronic illnesses and disabilities, Genetic disorders, Orphan drugs, Rare diseases
   

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