Home Dialyzors United, Comagine Health ESRD Network 16, and other sponsors will present a September 21, 2019 all-day patient educational meeting on home dialysis in Puyallup WA, called Going Home, Staying Home. The meeting will include sessions on patient priorities, home modalities, patient safety at home, how the Network can help, a panel on transplants, and a real-time support group. For details see the poster at https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/HDU/HDU.082119.pdf. Find HDU’s web page on it at https://www.homedialyzorsunited.org/patient-education, and register at https://www.eventbrite.com/e/one-day-patient-education-seminar-tickets-69449765117.
The National Kidney Registry (NKR) has extended lost wage coverage and other features of the Donor Care Network’s (DCN) Donor Shield program to all kidney donors enrolled in the Registry. The NKR and DCN are private foundations started in 2007 by the parents of a child whose kidneys failed, after their difficulty finding a donor whose blood type and other genetic factors (human leukocyte antigens or HLA) matched enough to reduce the rate of organ rejection. NKR has since developed an impressive list of innovations that have greatly facilitated reciprocal swaps and chains to match the HLA of donors and recipients:
- Faster and cheaper shipping of donated kidneys
- Improvements to HLA coding that have reduced match failures from 50% to 5%
- Universal financial agreement to end financial incompatibility between transplant centers
- GPS tracking of organs in transit
- Registered donor pre-screening and development of computable matching algorithms
- Cryo-preservation of donor blood to reduce repeated blood draws
- Advance donation when intended recipients don’t need a transplant yet
- Insurance and other support for registered donors
- Remote donation so donors don’t have to travel to donate
- Several other innovations that are too complicated to summarize in one line
DCN’s programs include broad Donor Shield insurance coverage, fast online pre-screening of potential donors, workup and post-op recovery at DCN centers located close to the donor to reduce donor travel, and donor feedback systems to facilitate process improvement. They are also piloting lifetime post-op insurance coverage for donors. There are fourteen DCN donations centers spread across the US, including one in Seattle and two in Southern California.
For details on the Donor Shield extension, see https://www.healio.com/nephrology/kidney-care-community/news/online/%7b517d83ee-4a44-4af9-9a5c-7085daf0cdcc%7d/national-kidney-registry-will-reimburse-donors-for-lost-wages. Find more information on NKR at https://www.kidneyregistry.org/ and on DCN at https://www.donorcarenet.org/programs/.
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.
AAKP’s HealthLine is hosting a series of three webinars on Pediatric Kidney Patients:
- The first in the series, What to Expect When Your Child Starts Dialysis, has been recorded, and can be found at https://www.gotostage.com/channel/6927452477730326277/recording/6a7d78ef17dc44a2afb9be805033b205/watch?source=CHANNEL.
- The second webinar, Tips for Parents and Other Care Partners on How to Support your Pediatric Kidney Transplant Patient, will be held April 4, 2019. Register at https://register.gotowebinar.com/register/8501074658969210381.
- The third and final webinar will be held April 17, 2019 on Growing Up as a Kidney Patient: Transitioning from Pediatric Care to Adult Care. Register for this one at https://register.gotowebinar.com/register/8540017161802055693.
You can find a catalog of recordings of all past HealthLine webinars at https://www.gotostage.com/channel/6927452477730326277, and a general introduction to the HealthLine program at https://aakp.org/aakp-healthline/.
April is National Donate Life Month. Find more information and tools at https://donatelifecalifornia.org/donatelifemonth/ and https://www.donatelife.net/ndlm/. You can also find a long list of Oregon activities at https://www.donatelifenw.org/news-and-events/calendar and https://www.tabortrot.com/. Organ donation is celebrated on Blue & Green Day, April 12, 2019; for information and tools see https://www.donatelife.net/blue-green-day/ and https://donatelifecalifornia.org/bluegreenday/.
Why would you want to donate a kidney? Maybe because of 100,000 stories like this one: http://www.espn.com/nfl/story/_/id/26047187/i-need-kidney-nfl-pass-rusher-dialysis-year.
UC Irvine Health will present a free March 16, 2019 World Kidney Day symposium in Orange, CA on Kidney health, featuring leading experts in Nephrology, Urology, Transplant, and Nutrition. Patients, providers, and community members are all invited to enjoy a day of education, health screenings, refreshments, and live entertainment. For details see https://twitter.com/IFKF_/status/1103801441846587392 and https://www.facebook.com/events/638668909886763/?notif_t=event_invite_reminder¬if_id=1551199891724380.
The UCLA Health CORE Kidney program will present a February 21, 2019 webinar on Living Kidney Donation. For details and pre-registration, see https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/UKEEP/ucla022119.pdf.
UKEEP will host a February 24, 2019 workshop on Kidney Disease: What You Should Know in Santa Monica CA. See https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/UKEEP/UKEEP022419.pdf for details and RSVP information.
The CORE Kidney program will also present:
- March 2, 2019 Diabetes Patient Conference; see https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/UKEEP/UCLA.dm030219.pdf for details and pre-registration information
- March 10, 2019 UKEEP PKD Update
- March 21, 2019 webinar on PD
- April 11, 2019 webinar on Fabry’s Disease
- May 2 webinar on the Kidney Health Fair
- May 5, 2019 Kidney Heath Fair at the Beach and Spirit Walk; for more information see https://www.uclahealth.org/core-kidney/kidney-health-fair.
Find more information, and recordings of earlier CORE Kidney and UKEEP programs, at https://www.uclahealth.org/core-kidney/, along with information about the UCLA PKD program and other related educational outreach.