The ESRD NCC will present a June 2, 2020 Patient Town Hall on You Too, Can Manage Transplant. Patients will share their experience with pre-transplant preparation, recovery, and adjusting to life after receiving a transplant. For details see below:
AAKP is asking dialysis patients to take a survey on their experience with and concerns about COVID-19. AAKP’s introduction follows:
“AAKP works closely and constructively with Federal and state officials on health issues of concern to both the general public and those who are immunocompromised – like kidney patients. As we have in the past with flu and vaccines, we are interested in relaying your insights about the Coronavirus to relevant officials so that their actions and communications are better informed and responsive to your concerns. As a dialysis patient, has the Coronavirus impacted your thinking or behavior? What communication, if any, have you, as a dialysis patient, received with your healthcare team and/or dialysis facility? TAKE A FEW MINUTES, TELL US YOUR THOUGHTS! AAKP will share insights gleaned from you with the brave medical and scientific professionals fighting the Coronavirus! … Answers and any comments provided will not be attributed to any individual – the FLASH SURVEY is completely anonymous.”
Previous podcasts can be found at https://www.rsnhope.org/, along with information about the Renal Support Network’s Annual Teen Prom, Annual Essay Contest, Monthly Support Group Meetings, Public Speaking Training, KidneyTalk Magazine, HOPEline Peer Support Hotline, KidneyTalk Blog, Renal Recipes, and the many other services RSN provides for ESRD patients.
We’ve published our Patient Newsletters for Winter 2020. They feature articles on treatment options, flu shots, grievances, access to care, how to stay informed by the Network, and how to help the Network improve patient care. Find them at:
AAKP’s Center for Patient Research & Education (https://aakp.org/center-for-patient-research-and-education/research/) is collaborating with the FDA to foster engagement with patients, caregivers, and patient advocates throughout the development, evaluation and surveillance of medical devices in order to gain insight from patients and caregivers about their experiences living with their diseases as well as experiences with medical devices intended to diagnose and treat their medical conditions. To further this effort, AAKP asks members to take a brief anonymous survey about the devices you have used. Find the survey at https://www.surveymonkey.com/r/GGTZNKX.
Home Dialysis Central has published a blog post on Traditional Dialysis vs. Transitional Care for Urgent Starts. Transitional Care for Urgent Starts (TCU) provides a gentler and more supportive introduction to dialysis for people whose kidneys fail with little warning, helping them get past the shock of a “sudden” change of just about everything in their life, and helping them make informed decisions about treatment modality. Of course kidneys don’t fail suddenly, but sometimes it seems that way to the person whose kidneys have failed. Find the post at https://homedialysis.org/news-and-research/blog/330-traditional-dialysis-vs-transitional-care-for-urgent-starts.