we’ve created a white paper that summarizes the insights and experiences that were collected
For companies that operate in the rare disease space, compassionate use policies are critical. Rare disease patients and caregivers are highly motivated to access treatments and they are skilled at using social media, online petitions, blogs, and videos to generate support. Maintaining good relationships with the patient community requires not only having a well-articulated policy for compassionate use, but also communicating about this sensitive topic in an effective way.
Siren’s workshop at the 2014 World Orphan Drug Congress (WODC) generated a rich and informative discussion about this timely issue, with experts providing the perspective of industry and advocacy groups. Panelists included Read More