11/19+ DPC Caregiver Webinar

Dialysis Patient Citizens will present an 11am PST November 19, 2020 webinar on Looking Out for the Caregiver: Understanding the People Who Care for Dialysis Patients. For details see below. Register at https://www.dpcedcenter.org/news-events/education-webinars/signup/?bblinkid=244466063&bbemailid=25295695&bbejrid=1697677768.

DPC will also host 11am PST webinars on Coping with the Holidays December 17, 2020; Advance Directives & Shared Decision-Making January 28, 2021; Nutrition and Exercise for the Immune System February 25, 2021; and The Empowered Patient: Taking Steps to Manage Diabetes and Chronic Kidney Disease March 25, 2021.

10/8 NCC Caregiver Webinar

The ESRD National Coordinating Center will present an October 8, 2020 webinar at noon PDT on The Kidney Caregiver Peer Connection Call. Too often the only person that can understand what you’re going through is someone who’s been there. The webinar is open to caregivers and patients who are affected by CKD, and offers strategies for wellness and support from fellow caregivers and care partners. To listen to the presentation, call 844-740-1264 and enter access code 133 121 4744. Find the video (without sound) by clicking HERE and enter Webex event number 133 121 4744 and password Peer2020! (including the exclamation point at the end).

AAKP Seeks CCPD Patient/Caregiver Input

AAKP is supporting a research initiative with Relavo, a medical device company aiming to make peritoneal dialysis safer and more accessible by reducing the risk of peritonitis, which hospitalizes 15% of PD patients annually.  Relavo is a recent winner of the KidneyX Innovation Accelerator Phase 2: Redesign Dialysis Competition, and of the KidneyX Patient Innovator Challenge.  AAKP and Relavo are seeking patients and caregivers with CCPD experience that are over 18, currently live in the US, and read/understand English, to participate in an online survey.  The results will be used to ensure that a Relavo device, the PeritoneX, addresses what matters most to patients and caregivers.  Learn more about PeritoneX, which disinfects CCPD tubing during treatment set-up, at https://relavomedical.com/.  Find the survey at https://www.surveygizmo.com/s3/5787206/Relavo-Device-Survey.

9/24 DPC Webinar in Spanish on Blood Sugar

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,
  • Coping with the Holidays – December 17, 2020.

9/16 NCC Tip Sheets on Multigenerational Living

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:

New NCC Kidney Patient Web Hub

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/.

11/14 National Diabetes and Caregiver Months

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/FDA Medical Device Survey

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.

SONG Glomerular Disease Survey

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
  • *Major forms of glomerular disease include:
      • ANCA vasculitis
      • Anti-GBM disease
      • Anti-glomerular basement membrane disease
      • Anti-neutrophil cytoplasmic antibody associated vasculitis
      • C3GN
      • Complement-mediated glomerulopathy
      • Focal segmental glomerulosclerosis
      • FSGS
      • Goodpasture’s disease
      • Goodpasture syndrome
      • GPS
      • Henoch-Schoenlein purpura
      • IgA nephropathy
      • IgA vasculitis
      • Lupus nephritis
      • Membranoproliferative glomerulonephritis
      • Membranous nephropathy
      • Minimal change disease
      • MPGN
  • **Stages of kidney disease development include:
      • Normal kidney function
      • Chronic kidney disease
      • ESRD, dialysis, or transplant

Answers will be completely anonymous and analyzed only in combination with other responses.  Find the survey at https://sydneypublichealth.au1.qualtrics.com/jfe/form/SV_djzDXYqzIQ0dMGN.  You will be asked for your name and email address so SONG-GD can send you a short follow-up survey.