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Genetic and Rare Diseases Information Center (GARD)

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Retinitis pigmentosa 1

Other Names for this Disease
  • RP1
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

Your Question

Where 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?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

Where can I find information on National Institutes of Health (NIH) funding for rare diseases, specifically retinitis pigmentosa?

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.

Last updated: 10/22/2013

What is the economic cost of retinitis pigmentosa?

While we were not able to locate the economic cost of retinitis pigmentosa, Prevent Blindness America has released a report estimating the costs associated with oterh vision problems in the United States. 

Prevent Blindness America
211 West Wacker Drive
Suite 1700
Chicago, Illinois 60606
Toll-free: 1-800-331-2020
Online e-mail:
Web site:

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
Telephone: 818-992-0500
Fax: 818-992-3265
Web site:

Foundation Fighting Blindness
11435 Cronhill Drive
Owings Mill, MD 21117-2220
Toll-free: 1-888-394-3937
Telephone: 410-568-0150
TDD: 1-800-683-5555
Web site:

National Federation of the Blind (NFB)
200 East Wells Street at Jernigan Place
Baltimore, MD 21230
Phone: 410-659-9314
Fax: 410-685-5653
Web site:

Last updated: 10/22/2013

How can I learn about research involving retinitis pigmentosa?

The U.S. National Institutes of Health, through the National Library of Medicine, developed to provide patients, family members, and members of the public with current information on clinical research studies. To find trials on retinitis pigmentosa, click on the link above and use "retinitis pigmentosa" as your search term. Check this site often for regular updates.
Last updated: 10/15/2013

How many people have retinitis pigmentosa in the United States?

The prevalence of retinitis pigmentosa in the United States is estimated to be 1 in 4,000 individuals.[1]
Last updated: 12/1/2008