Portraits of Resilience: How Patients and Caregivers Cope through the COVID Pandemic By Richard Tsai The word “storytelling” invokes a pleasant image of listeners around a campfire, listeners from any era and any culture. It could, however, just as accurately evoke an image of brain chemistry that creates direct experience and even [...]
Collaborating with Rare Disease Patient Advocacy Organizations By Judy Chandler MPH, CHES The first Rare Disease Day took place on February 29, 2008, chosen because February 29 is a “rare date.” Since then, it has continued to occur on the last day of February. Inspire will participate in this year’s worldwide awareness [...]
The Case for Online Consumer Recruiting Over the past few years, recruiting for consumer healthcare market research has undergone a drastic change. In the past, pharma clients would take their business questions to their research vendors, who could easily leverage panel companies to fill the desired project samples and ultimately deliver successful [...]
Rare Disease and Social Media: Making Connections Being Alone and Disempowered Keeping illness, pain and suffering a secret for years is the reality for many people with rare diseases. Now, on social media, they are writing about it, sharing the desperation and the hurt. And they are finding each other in [...]
