It’s been 35-years since the passing of the Orphan Drug Act, and creation of the National Organization for Rare Disorders (NORD), reports PR Newswire. Even though these organizations recognize there is so much more to do in the rare disease world, there are multitudes of accomplishments to honor this year.
In review, the Orphan Drug Act was passed back in 1983, allowing pharmaceutical companies to focus on rare disease drug development. The Act gave large tax break incentives and other benefits to companies who developed drugs for rare diseases. Prior to 1983, only a mere 34 drugs were developed and passed by the Food and Drug Administration (FDA). This number was profanely low, yet after the Orphan Drug Act came to pass, a promising 600 drugs were developed and approved by the FDA. Thousands of other treatments are also in the pipeline awaiting approval.
This is an incredible feat for everyone in the rare disease community. Still, knowing that there are 7,000 rare disease out there, affecting nearly 30 million Americans, and only about 500 of those diseases have approved treatments… we must acknowledge that more needs to happen.
NORD was successfully developed back in the 80s, with a banding of determined advocates who’s families were directly affected by rare diseases. They taught themselves everything they needed to know to build an organization, positively influence society, and bring active awareness. They bonded together and provided each other with the needed community and support system they all so deeply needed. Together they made sure they were known and their voices were heard.
The recognition of accomplishments will continue to resurface this year, as NORD will share success stories on their website as well as hold an awards ceremony in Washington D.C. They all know there is a lot to celebrate at this time, but it’s just the beginning for much more that needs to be done for the rare disease community.
