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 →
Eleven centers to capture patient-reported outcomes about rare form of eye cancer March 4, 2019, Oxford, England & Conshohocken, PA & Rockville, MD & ON, Canada — Immunocore Limited, a... read more →
This summer, Pulse welcomed: Friedreichs Ataxia Research Alliance (FARA), a non-profit organization dedicated to curing Friedreich’s Ataxia and the related ataxias. The FARA registry will facilitate dialogue between the public and scientific... read more →
Supporting this growth, Pulse Infoframe has added more specialist staff and moved to new, larger offices to better support its clients. In 2018, Pulse Infoframe attended, presented or exhibited at Patients as... read more →
We have some exciting updates on two Pulse Infoframe registries. Pan-Canada Cancer Registry The success of the Canadian Melanoma Research Network, powered by Pulse and currently encompassing 10 major Canadian cancer... read more →
Proving the power of global collaboration, the Castleman Disease Collaborative Network, an initiative dedicated to accelerating research and treatment for Castleman disease, convened 42 experts from 10 different countries to establish the first-ever treatment guidelines for idiopathic... read more →
Empowering 76,000 Clinicians in Australia With New Patient Insights The voice of NSW's 7 million citizens is rising thanks to NSW's forward-thinking leaders committed to improving patient care across Australia's... read more →
Patient Portals, Evidence-Based Patient Reported Outcome Measures, Health Registries, Real Time Analytics, & Data Visualization Capabilities Offering Augments Member Benefit (Boston, Mass. and London, Ont., Oct 25, 2017) Senior executives... read more →
Partnership to Result in Real Time Data to Inform Policy Makers, Advance Research and Benefit Those Living with Melanoma (North Vancouver, British Columbia. and London, Ontario, July 12, 2017) Senior... read more →
