Join the groundswell to expedite scientific research

In Clinical Development by Caroline Hornby

scientific research, orphan drugs and government policy Siren Interactive kindly provided this guest blog post from their blog, SirenSong. It was written by their Founder and President, Wendy White.

A petition has been posted on the White House website, We the People, to require free access over the Internet to scientific journal articles arising from taxpayer-funded research. Expanding access would accelerate the research process and increase the return on our investment in scientific research. With FDA-approved treatments for only about 5% of the 7,000 rare disorders, this initiative is very relevant for the rare disorder patient community.

The first step towards instituting this policy is to secure 25,000 signatures on the petition by June 19, 2012. With that level of visible public support in place, the measure will be reviewed by White House staff, and considered for action

The highly successful Public Access Policy of the National Institutes of Health (NIH) proves that this can be done without disrupting the research process. We urge President Obama to act now to implement open access policies for all federal agencies that fund scientific research. Show your support and spread the word about this petition via your social network. Anyone who’s at least 13 years of age is eligible to sign the petition after creating an account to verify a valid email address at

For more information on rare disease and government policy check out the World Orphan Drug Congress USA.