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 Gwadry-Sridhar (R).
Pulse Infoframe has just returned from the Great Plains Rare Disease Conference in Sioux Falls, spoken at Patients as Partners in Philadelphia, Clinical Research as a Care Option in Raleigh Durham, the Patient Experience Symposium in Boston, and the Canadian Organization for Rare Disorders Conference in Toronto. Our presentation topics included discussions on real world evidence, patient engagement, and other relevant themes. Now a member of Rare Disease International (RDI), Pulse Infoframe attended RDI’s inaugural rare disease conference at the United Nations in New York, cementing our commitment to rare disease communities globally. In support of our clients everywhere, Pulse Infoframe was in Washington DC for Rare Disease Week, including Rare Disease Day at the NIH, and attended and presented at other events. Look for us at BIO2019 in Philadelphia in June.
Real World Evidence and Patient Centricity were two highlighted themes in Europe. In March, at the 9th Orphan Drugs and Rare Diseases Global Congress 2019 in London, Femida was a featured speaker during the opening sessions, which focused on macro outlooks and trends, and moderated later sessions on policy framework and collaboration. At the Patients as Partners Conference in London, Dr. Tamara Howard, Pulse VP of Patient Advocacy, presented on technologies and services for reducing the burden for patients and investigators in clinical trials while driving better health outcomes. Femida was also invited to attend a Rare Disease International event at World Health Assembly of the World Health Organization in Geneva.
There is a lot of interest in Patient Reported Outcomes and Experiences down under. Pulse Infoframe’s PROMs/PREMs offerings played a central role at the annual Patient Experience Symposium 2019 in Sydney, where participants were given a preview of the PROMs/PREMs systems that are being implemented throughout New South Wales Health Services. In the rare cancer space, Dr. Femida Gwadry-Sridhar, Pulse Infoframe Founder and CEO, spoke at Australia’s prestigious Garvan Institute for Medical Research about our new Uveal Registry, for which Australia will be a hub.