The UCLA CORE Kidney Program has announced that they’ll be participating in the 115th Annual Huntington Beach Fourth of July Parade & Festival. For more information on this and other UCLA CORE Kidney and UKEEP events, see https://www.uclahealth.org/core-kidney/upcoming-events. For instance, their webinar on Alport Syndrome is coming up on July 11, 2019, as well as UKEEP’s patient meeting on High Blood Pressure on July 14. Recordings of past UCLA CORE Kidney and UKEEP webinars, on topics such as Transplantation, Fabry’s Disease, Adult PKD, and more, can be found at https://www.uclahealth.org/core-kidney/past-events.
They’ve also announced the date for their 2020 UCLA Kidney Health Fair & Spirit Walk for Kidney Disease, May 17, 2020. Find more information at https://www.uclahealth.org/core-kidney/kidney-health-fair.
NKF has scheduled 2019 Kidney Walks for the following places and dates:
There appear to be none scheduled for Washington, Oregon, Montana, or Alaska. For more information on Kidney Walks, see https://secure2.convio.net/nkf/site/SPageNavigator/kidney_walk_splash.html.
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
- Complement-mediated glomerulopathy
- Focal segmental glomerulosclerosis
- Goodpasture’s disease
- Goodpasture syndrome
- Henoch-Schoenlein purpura
- IgA nephropathy
- IgA vasculitis
- Lupus nephritis
- Membranoproliferative glomerulonephritis
- Membranous nephropathy
- Minimal change disease
- **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.
CMS has commissioned UM-KECC to assemble 10-20 volunteers for a Technical Expert Panel (TEP) to formulate a process for periodically resetting ESRD clinical quality Star-Rating criteria so that the Ratings continue to differentiate facility quality of care when treatment-quality trends reduce the variation between facilities. Volunteers will include patients, caregivers, ESRD subject matter experts, methodologists, and specialists working on dialysis QI and healthcare disparities. The TEP will require a one-day in-person meeting in Baltimore in June, plus 3-7 conference calls before and after. Nominations must be submitted by April 5, 2019. The current call for nominations doesn’t mention it, but past TEPs have reimbursed travel expenses. For details and nomination forms, see https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/MMS/TEP-Currently-Accepting-Nominations.html#a0305.
ESRD Network 16 is recruiting for new volunteers to serve on our Patient Advisory Committee (PAC). PAC members:
- Advise on Network education and outreach
- Assist with Network Quality Improvement Activity design and interventions
- Meet with Medicare (CMS) on conference calls to provide feedback from a patient perspective
Most PAC activities are conducted by phone call and email, though there are occasional opportunities for in person meetings. Any travel to in-person meetings will be funded by the Network.
Please share the Informational Flyer at https://s3-us-west-2.amazonaws.com/nwrn.org/files/PAC/Nw16PACFlyer1118.pdf, and the Application form at https://s3-us-west-2.amazonaws.com/nwrn.org/files/PAC/Nw16PACForm1118.pdf, with patients and care partners in Alaska, Idaho, Montana, Oregon, and Washington that might be interested. Application forms are due to the Network by November 26, 2018.
NKF and the Portland Kidney Group will hold their Annual Holiday Party on November 11, 2018. Light kidney-friendly food and drinks will be provided, so you need only bring your family, your friends, and your appetite. However, please RSVP before November 4 with the number of people you expect to bring, so an appropriate amount of food can be stocked! A renal dietitian will talk about hearty but kidney-friendly holiday cooking. Volunteers to help with the Party will be welcomed. Find all the details you’ll need at https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/PKG/PKG.Holiday.Party.2018.pdf.
Mark your calendar for the Tabor Trot fun walk/run and gathering the morning of May 26 at beautiful Mt.Tabor Park on the Saturday before Memorial Day. See past photos, video, more information, and register at http://www.tabortrot.com/. We’ve already posted information on other Donate Life Northwest events in Portland (April 22, May 7) and Medford OR (April 11-15); for details see our Patient Calendar at the link above. Donate Life Northwest has also recently added four new Portland volunteer opportunities:
Donate Life has also provided details on their 2018 raffle – winners will be vacationing in Maui, Baja California, Santa Fe NM, Lake Tahoe NV, or Seaside OR – see https://www.donatelifenw.org/content/annual-raffle. For a summary of and links to all this news, see https://mailchi.mp/donatelifenw.org/april-donate-lifeline?e=d7486be0ed.