This web site is dedicated to telling the story of the Orphan Drug Act and how scientists, support groups, patients and companies stepped forward to ensure that the promise of the federal law would be achieved. That extraordinary success quickly became known throughout the industrialized world, and thus encouraged other governments to create their own orphan disease legislation.
I want to invite visitors to this blog to send us your own stories about how Orphan Drugs or rare diseases have affected your lives, whether you are a patient or family member, whether you worked for a pharmaceutical or biological company that developed orphan drugs, whether you worked for a government or a non-profit corporation, whether you are a doctor, scientist, pharmacist or other health care worker, or whether you simply care about this topic and would like to submit a comment. Let us know whether we can use your real name or if you would like to stay anonymous.
Nothing can guarantee that your statement will be posted on this blog, and some may be edited for the sake of length. But we would like to hear from you so your stories can be added to the body of knowledge that flourishes around the world-wide orphan drug and orphan disease network.
Thank you for allowing me and my colleagues to touch your lives even in the smallest way. It has been a privilege.