Rare Disease Report


MAY 30, 2016
Please share with your Senator. Click the image below to watch the video.

The OPEN ACT (Orphan Product Extensions Now Accelerating Cures and Treatments) Act of 2015 was passed through congress and committee and now awaits the Senate. The bill amends the Federal Food, Drug, and Cosmetic Act to require the Department of Health and Human Services (HHS) to extend by 6 months the exclusivity period for a drug or biological product approved by the Food and Drug Administration (FDA) when the product is additionally approved to prevent, diagnose, or treat a new indication that is a rare disease or condition (also known as an “orphan disease”). 

In other words, it encourages companies to 'repurpose' older drugs for rare conditons.

Max Schill has a RASopathies called Noonan syndrome. When not in Washington lobbying for #CuresNow, he goes to school, plays with his friends, and cheers on his mom at fundraisers.

Stay informed on the latest rare disease news and developments by signing up for our newsletter.
Copyright © RareDR 2013-2018 Rare Disease Communications. All Rights Reserved.