NephCure Presents NKN Poster Session at the National Conference on Engaging Patients, Families and Communities in all Phases of Translational Research to Improve Health August 28, 2014 by Lauren Eva NephCure was selected to present a poster session about the NephCure Kidney Network Patient Registry (NKN) at a national conference held August 21-22 in Bethesda, MD. The goal of the conference, hosted by Duke University’s Translational Medicine Institute, was to present and compare perspectives and examples of methods of engagement in research that include individuals, including patients and families and to generate ideas for sustaining community-engagement in all phases of research. Joanna Dauber, NKN Patient Registry Manager, notes, “Our presentation of the impact of social media in patient engagement was very well received. We had health care providers, scientists and other patient advocates comment on our early success of 200 enrollees in the NephCure Kidney Network patient Registry (NKN) within the first four months of the program. This is considered a robust start for a rare disease community.” Ms. Dauber and Chelsey Fix, a summer intern at NephCure, demonstrated the impact on enrollment after each targeted patient outreach campaign. The most successful method is personalized emails to patient families who have engaged with NephCure in the past (e.g., attended a Walk or a Lunch & Learn/Community Café). New patients respond best to Facebook posts. In addition to providing information about NKN, Ms. Dauber and Ms. Fix took advantage of the conference to meet informally and gain perspective on how other patient advocate groups engage community, especially methods for engaging community-based physicians so that they are comfortable informing their patients to consider enrolling in a patient registry. “An invitation to this prestigious event is not only important to raise NephCure’s profile, but it provides opportunity to learn from others so we can accelerate new research that will lead to better therapies for FSGS and other primary Nephrotic Syndrome disease,” says Marilyn Hailperin, National Director of Research. “We seek opportunities all the time to learn from others’ best practices and incorporate new ideas into our research agenda.” NephCure recognizes that patients’ perspective is important to advancing new research that will improve patients’ lives. The invitation to present at this National Conference demonstrates that NKN is emerging as a leading patient powered research network.
NephCure Attends National Kidney Foundation Spring Clinical Meetings in Las Vegas, Nevada August 8, 2014 by Lauren Eva NephCure went to Las Vegas last week for the National Kidney Foundation’s Spring Clinical Meetings, where 3,000 nephrologists, nurses, dietitians, and social workers, among others, gathered to learn about the newest developments related to all aspects of nephrology practice. We met with some area Nephrologists and patients and shared information around the NephCure Kidney Network Patient Registry (NKN). NephCure Scientific Advisory Board members Dr. Debbie Gipson, Dr. Daniel Cattran, and Dr. Gerald Appel were in attendance and led workshops on updates in Nephrotic Syndrome for 2014. NephCure was also one of several authors of “Understanding Decision Making in Nephrotic Syndrome (NS) from the Perspective of Patients, Parents and Providers” which was presented at the Poster Session throughout the conference. We also saw a lot of promotion for the Luis Collazo fight, which took place May 3rd at the MGM Garden Arena. Collazo was wearing NephCure in support of his friend Allie Genatt.