The Office of Rare Diseases is part of the National Institutes of Health (NIH) and was
established in 1993 to focus on rare diseases, being defined as a disease or condition
affecting fewer than 200,000 persons in the United States. An estimated 25 million people
in the United States have a rare disease. Peyronies is listed as an officially recognized
rare disease.

NIH will soon be publishing a Request for Applications to facilitate clinical research into
rare diseases, including longitudinal studies of individuals with rare disease, data mining,
training of clinical research in the field of rare disease, etc. It will encourage new
approaches to diagnosis, prevention and treatment of rare diseases.

My commentary: Let's be realistic. Peyronies is an embarrassing condition that is difficult
to talk about.  I am not convinced that fewer than 200,000 in the U.S. have this
impairment. A data mining approach could be of great assistance to the Peyronies
My hope is that someone reads this web site and will apply and can qualify
for research funds.
This Office of Rare Diseases publishes a newsletter, but
unfortunately, of the many disease discussed, Peyronies is not one of them. Hopefully,
this web site will have some success and I will try to write an article about our condition for
this newsletter.      

Click here to for NIH's Office of Rare Diseases