Retinitis pigmentosa 1
Your QuestionWhere can I find information on National Institutes of Health (NIH) funding for rare diseases, specifically retinitis pigmentosa? I am also looking for information on the cost of having this condition and current research projects. How many people have retinitis pigmentosa in the United States?
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Questions on this page
- Where can I find information on National Institutes of Health (NIH) funding for rare diseases, specifically retinitis pigmentosa?
- What is the economic cost of retinitis pigmentosa?
- How can I learn about research involving retinitis pigmentosa?
- How many people have retinitis pigmentosa in the United States?
The NIH does not collect information on how much money is spent on rare diseases in general or how much is spent on individual rare diseases because it's very hard to estimate correctly and there are about 6,000 rare diseases. Individual grants aren't indexed for all of these diseases. We do know from past reviews that about 18-20% of the total number of research grants and contracts that the NIH funds focuses directly on rare diseases.
NIH categorizes its spending in a variety of manners to satisfy diverse reporting requirements. NIH tracks spending for specific diseases (Alzheimer's disease, breast cancer, etc.), expenditures for various conditions (infertility, obesity, etc.) and specific areas of research (genetics, substance abuse, etc.). NIH annually updates both actual and projected expenditures (based on the current year funding level and the President's budget funding level). Visit the link below for the latest estimates. Note that this table includes estimates for research in many diseases, conditions, and research areas which are also included under other diseases, conditions, and research areas because the research contributes to multiple fields of research. Therefore, the table is not additive. These estimates are only for NIH funding and do not include industry or foundation funding or funding from other federal agencies.
Prevent Blindness America
211 West Wacker Drive
Chicago, Illinois 60606
Online e-mail: http://www.preventblindness.org/contact/
Web site: http://www.preventblindness.org/
The following organizations may be able to provide more information on the economic cost of retinitis pigmentosa:
Retinitis Pigmentosa International
PO Box 900
Woodland Hills, CA 91365
Web site: http://www.rpinternational.org
Foundation Fighting Blindness
11435 Cronhill Drive
Owings Mill, MD 21117-2220
Web site: http://www.blindness.org
- Pagon RA, Daiger SP. Retinitis Pigmentosa Overview. Gene Reviews. September 16, 2005; http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=rp-overview. Accessed 12/1/2008.