We’re excited to share that Dr. David Fajgenbaum, a friend and collaborator of Pulse InfoFrame and PI of the ACCELERATE registry which is powered by Pulse, is sharing his amazing... read more →
Patient-reported data will help inform research in rare form of eye cancer Immunocore Limited, a leading T cell receptor biotechnology company, and Pulse Infoframe, Inc. (Pulse), a data aggregation and... read more →
Here are a few highlights of our travels from the past few months. Dr. Durhane Wong-Rieger (L), President of the Canadian Organization for Rare Disorders (CORD), and our Dr. Femida... read more →
Several of our clients have celebrated some huge successes this season. Take a look! Simon’s Heart Since 2011, Simon's Heart has advocated for the Sudden Cardiac Arrest Prevention Act. In... read more →
Our staff has grown in recent months as we help more organizations use real world evidence to find effective treatments for rare diseases. Paul Ferraiolo: Chief Innovation Officer Paul brings... read more →
Our newest customers provide further examples of how real world evidence (RWE) in healthcare is used. National Kidney Foundation Patient Network The National Kidney Foundation just announced the first-ever interactive... read more →
Pulse Infoframe joins forces with National Kidney Foundation to develop the NKF Network, a powerful new resource poised to spur breakthrough collaboration and improve the quality of people's lives. The... read more →
by Joe Ternullo Patients as Partners conferences are the only conferences in the US and Europe dedicated to demonstrating how to systematically involve patients throughout the entire drug development life... read more →
For Julian Summers, it was a long time coming. For his brother John it was too late: he had passed away a year ago, succumbing to Alstrom Syndrome. What could... read more →
by Joe Ternullo I just returned from Rare Disease Week on Capitol Hill, a spectacular and unique event that Pulse Infoframe was privileged to support. Over 500 patient advocates trekked... read more →