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.
NKF and the Portland Kidney Group will host its Annual Holiday Party November 10, 2019 in Portland OR. Food and drinks will be provided, and family and friends are invited. The party will feature a dietitian talking about hearty but kidney-friendly holiday cooking. Volunteers are needed to help get everything ready. You’re asked to RSVP by November 4, 2019. Find more information on the Party, on volunteering, and on how to RSVP, at https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/PKG/PKG1119.pdf.
Just a reminder that the LA Kidney Walk will occur October 13, 2019 in Encino CA, and volunteers are welcome to help with setup on October 12. Kidney Walkers find sponsors to donate to help raise funds to support NKF’s many ways that they support kidney patients, providers, and research. The LA Walk is only 38% of the way toward their fundraising goal. Find full details at http://donate.kidney.org/site/TR/Walk/NKFServingtheWest?fr_id=9026&pg=entry.
The University of Michigan Kidney Epidemiology and Cost Center, under contract to CMS, is seeking dialysis patient and facility staff volunteers to provide feedback, via a half-hour phone call, on a draft of a short self-report questionnaire on patient life goals. They seek both patients with experience on HD, PD, or HHD, and clinical staff (nephrologists, nurses, dieticians, social workers). Those interested are asked to send a one-paragraph statement describing your interest and experience, to firstname.lastname@example.org by September 12, 2019.
NKF and the Portland Kidney Group will present NKF’S Annual Kidney Wellness Fair & BBQ Picnic in Portland OR on August 25, 2019, featuring wellness exhibits, an art show, resources, prizes, and a free BBQ lunch. Volunteers to help arrange the festivities are requested. Find full details and registration information at https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/PKG/PKG082519.pdf.
NKF and the Portland Kidney Group will present NKF’S Annual Kidney Wellness Fair & BBQ Picnic in Portland OR on August 25, 2019, featuring wellness exhibits, an art show, resources, prizes, and a free BBQ lunch. Volunteers to help arrange the festivities are requested. Find full details and register at https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/PKG/PKG082519.pdf.
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.