Category Archives: Patient Advocacy

8/16+ NW16 PKD Events, Seattle

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The Seattle Chapter of the PKD Foundation will host an August 16, 2017 Coffee Chat in Factoria (Bellevue WA) to promote networking among people affected by PKD.  The discussion is informal, but a topic or guest speaker is usual.  For details and to sign up, see http://support.pkdcure.org/site/Calendar?view=Detail&id=101732 .  These events are held more or less monthly; the next one will be September 10, 2017.  Watch https://pkdcure.org/chapter/seattle/ for details.

The PKD Foundation will also sponsor an August 19, 2017 Seattle Friends & Family Potluck Picnic & Lemonade Stand, in Seward Park (Seattle).  Find more information at http://support.pkdcure.org/site/Calendar?view=Detail&id=101846 .

The Foundation will also sponsor the three-mile Seattle Walk for PKD on October 1, 2017 at Green Lake (Seattle).  For details, posters, to register for the Walk or the associated Penny Kids Dash, and to donate, see http://support.pkdcure.org/site/TR/Walk/WalkforPKD?fr_id=1766&pg=entry .  So far they have pledges of $10,000 for the Walk, and they seek at lease $45,000 more to support PKD research and create better lives for those impacted by polycystic kidney disease.

6/16 AKF Protein Webinar

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AKF will present a June 16, 2017 webinar on Protein: Who Needs It Anyway?  You Do!  Find details and register at http://www.kidneyfund.org/training/webinars/ .

At the same web page you can find recordings of their past webinars, including:

  • Humanizing Dialysis; Choosing the best type of treatment for kidney failure can be difficult for patients, especially when they receive little guidance
  • Saying no to dialysis: choosing conservative care for end-stage kidney disease
  • A patient’s perspective: Be your own advocate; Navigating the health care system as a patient can be challenging
  • Heart disease and kidney disease – what’s the connection? – Heart disease can cause kidney disease, and kidney disease can cause heart disease
  • Unique strategies for improving the effectiveness of exercise training in patients with kidney failure
  • Paired kidney exchanges and opportunities for kidney transplant in minority patients
  • Living with diabetic kidney disease; Diabetes is the leading cause of kidney disease, and many people suffer from both conditions
  • Enfermedad de los riñones crónica: prevención y tratamiento; Con motivo de la celebración del Mes de la Herencia Hispana, ¡brindaremos nuestro primer seminario web en español!
  • Emergency preparedness and kidney disease – using KCER as a resource
  • Organ transplant among minorities: How we can reduce the need and improve access
  • I need a kidney transplant.  Am I covered now?  What about in the future?
  • Staying employed with kidney disease; A diagnosis of kidney failure doesn’t have to mean quitting your job
  • What CAN I eat?  Nutrition for dialysis patients
  • Living with chronic kidney disease: The ups, downs, and all arounds
  • Chronic Kidney Disease: A General Overview and Keys for Successful Management

DFC Toolkits

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Medicare has published a Dialysis Facility Compare Social Media Toolkit brochure in three versions (for patients or consumers, for dialysis facilities, and for physicians) and two languages (English and Spanish).  They provide graphic and text suggestions for sharing and promoting DFC on social media.  Find copies of them at:

4/20 Feedback to CMS

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CMS will hold an Open Door Forum feedback session April 20, 2017 in Baltimore MD, with virtual attendance available, on the CMS Quality Improvement Organization (QIO) program, which includes the ESRD Networks.  CMS will be seeking input from stakeholders and the general public about how to implement QIO program goals of maximizing program efficiency while continuing to improve quality of care for Medicare beneficiaries.  For details and registration see https://register.mitre.org/CMS_Special_Session/ .

4/12 CMS Feedback Webex

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The CMS Quality Improvement and Innovation Group is hosting a session with Medicare beneficiaries, families, caregivers, and advocates to gather information about healthcare quality improvement integration, gaps, and ideal outcomes, on Wednesday, April 12, 2017 at 2pm EDT, which is 11am PDT.  You can join the Webex at https://mitre.webex.com/mw3100/mywebex/default.do?service=1&siteurl=mitre&nomenu=true&main_url=%2Fmc3100%2Fe.do%3Fsiteurl%3Dmitre%26AT%3DMI%26EventID%3D242824642%26UID%3D0%26Host%3DQUhTSwAAAAPoyDgLCLfLHjFHMF3xlLgEaTGbwbt46gcB7K653b4OYK3brFSWysdXI47I6qwFjY4ppqs-YZaENcrmcI4mHSBk0%26FrameSet%3D2%26MTID%3Dm346742cc4264be6c6281a1ac541e94d5 , meeting number or access code 634 491 197, password QIO12SoW.  Or you can call in to 877-668-4490.

You can get Webex help at http://help.webex.com/ .  The CMS QIIG is at https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/QualityImp rovementOrgs/Current.html .

Patient Employment and Advisory Council

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The December issue of the Northwest Renal Network’s patient newsletter, Network Consumer News, focuses on the Patient Advisory Council or PAC, and includes stories about three of the seven current PAC members and their experience with Vocational Rehabilitation.  We’ve mailed these to facilities for distribution, but you can get a copy on the Network 16 website.  As usual, we also have a Spanish edition and a large-print edition.  With this issue we’ve also included a flyer or poster encouraging committed and engaged patients and care partners to join the PAC.  Find them all at https://www.nwrn.org/patients-a-family/ptedres/ncn.html .  You can also find more information on the Network 16 PAC at https://www.nwrn.org/patients-a-family/patient-advisory-committee.html .  In southern California, find information about the Network 18 PAC and other volunteer opportunities at http://www.esrdnetwork18.org/patients/how-to-get-involved/ and http://www.esrdnetwork18.org/about/governance/ .

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