Putting Rare Diseases Patients First!(R)

The Putting Rare Diseases Patients First!® organization is a 501 (c) (3) non-profit, and a registered charity. It has tax exempt status with the US tax authorities (IRS), and in California. Donations will be tax deductible.

What do we do? We provide information that can help you find new treatments and diagnostics for your rare disease. Why do we do this? We believe that Knowledge is Power. Patients with rare diseases need effective diagnostics and treatments. For this to happen, they must be an active part of the process of developing new diagnostics and treatments. This organization seeks to provide empowering information to rare disease patients, and the parents of children with rare diseases, about the clinical trial and drug development process.

Many rare disease patients suffer for many years, and some even die without a conclusive diagnosis. Even after they receive a diagnosis, many patients with rare diseases do not have access to a treatment that is effective. For most of them, the search for effective new treatments continues for a very long time. Do you have a rare disease? What if we could give you information that would lead you to a conclusive diagnosis, or even a treatment or a better treatment? We believe that would make a difference to your life. 

The Putting Rare Diseases Patients First!® organization provides information on the clinical trial process to patients and parents using several different methods, including Webinars (online seminars in real time), newsletters, Emails, using social media (Facebook and Twitter), and using a Blog.