From Rare Disease Day at NIH
On February 27, 2015, the National Institutes of Health (NIH) will celebrate the eighth annual Rare Disease Day with a day-long celebration and recognition of the various rare diseases research activities supported by NCATS’ Office of Rare Diseases Research, the NIH Clinical Center, other NIH Institutes and Centers….
Rare Disease Day was established to raise awareness with the public about rare diseases, the challenges encountered by those affected, the importance of research to develop diagnostics and treatments, and the impact of these diseases on patients’ lives…
There are about 7000 rare diseases identified in the United States. About 80 percent of rare diseases are genetic in origin and it is estimated that about half of all rare diseases affect children. Rare diseases can be chronic, progressive, debilitating, disabling, severe and life-threatening. Information is often scarce and research is usually insufficient. People affected face challenges such as delays in obtaining a diagnosis, misdiagnosis, psychological burden and lack of support services for the patient and family. The goals remain for rare disease patients to obtain the highest attainable standard of health and to be provided the resources required to overcome common obstacles in their lives.
The National Organization for Rare Disorders (NORD), a leading independent, non-profit organization committed to the identification, treatment, and cure of rare disorders, serves as the sponsor of Rare Disease Day in the United States. For more information, visit http://rarediseaseday.us/, by the nonprofit National Organization for Rare Disorders (NORD).
- National Organization for Rare Disorders- a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. Information, resources, and communities for patients and families . Patient organizations and rare disease information. Additional information for medical professionals as grant information and physician guides.
- Sample PubMed searches:
- Sample CINAHL (Nursing/Allied Health) searches
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