Dialysis Patient Citizens will present a September 24, 2020 Spanish-language webinar on Manejando Mi Glucosa En Sangre Cuando Tengo Enfermedad Renal (Managing My Blood Glucose When I Have Kidney Disease), covering carbohydrates and their effect on blood glucose, how much carbs to eat, and how to avoid high and low blood glucose extremes. Find more information below, and register for this and future DPC webinars at https://www.dpcedcenter.org/news-events/education-webinars/.
Upcoming DPC webinars include:
Things to Know About Medicare Advantage’s First Open Enrollment for Dialysis Patients – October 22, 2020,
Looking Out for the Caregiver: Understanding the People Who Care for Dialysis Patients – November 19, 2020,
The supplement the September 16, 2020 NCC COVID-19 webinar on Living in a Multi-Generational Household, NCC has produced one-page tip sheets in English and Spanish on Staying Safe in Multigenerational Households (Cómo mantenerse seguro en un hogar mul generacional). Find more details and register for the webinar at https://esrdncc.org/en/events/2020/september-2020/covid09162020/?date=9/1/2020. Find the tip sheets below:
NCC has created an internet “hub” for patient education information, their ESRD NCC Patient Web Tool, to help people find resources created by patients for patients. It’s major subsections include COVID-19. transplant, home dialysis, infection prevention, well-being, new patient information, and the Kidney Community Emergency Response Coalition or KCER. Find it at https://thekidneyhub.org/.
November is National Diabetes Month and National Family Caregivers Month, and November 14, 2019 is World Diabetes Day. The theme for both Diabetes Month and Diabetes Day this year is Family and Diabetes. The theme for 2019 Family Caregivers Month is Caregiving Around the Clock. To find out more, see:
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.
The Standardized Outcomes in Nephrology – Glomerular Disease (SONG-GD) study is an international initiative to identify outcomes in glomerular disease that are important to patients, caregivers, clinicians and other health professionals. This will inform the development of core outcomes that are important and relevant to measure and report in glomerular disease.
SONG-GD includes a voluntary 15-minute survey to help determine a core outcome set for glomerulonephritis trials, to be taken by anyone who meets the following criteria:
You are 18 yrs of age or older
You are one of the following:
A patient with any major form of glomerular disease*, at any stage of development**
A family or household member of a patient with any major form of glomerular disease*, at any stage of development**
A caregiver for a patient with any major form of glomerular disease*, at any stage of development**
A healthcare practitioner or trainee, social worker, dietitian, pharmacist, psychologist, physiotherapist, researcher, policy-maker, or other stakeholder who deals with glomerular disease
You work in an industry that deals with glomerular disease
MEI has released a Spanish edition of their Partner Agreement on Tasks for Home Dialysis (PATH-D), or Acuerdo del Compañero sobre tareas para la Diálisis en el hogar. Find it, for either PD or HHD, along with other useful home care resources, at https://www.homedialysis.org/life-at-home/care-partners.
We need one patient from Idaho, and one from Montana
Kidney Community Emergency Response Coalition (KCER): This is a national group devoted to improving emergency preparedness and response for kidney patients and ESRD facilities. This involves quarterly conference calls. Learn more about the Coalition at http://www.kcercoalition.com/. We need two patients from any Network state – Alaska, Idaho, Montana, Oregon, or Washington.