The HHS Health Resources and Services Administration (HRSA) has published a Final Rule on Removing Financial Disincentives to Living Organ Donation, effective October 22, 2020. The Rule aims to reimburse organ donors more appropriately. Find the Rule in the Federal Register at https://www.govinfo.gov/content/pkg/FR-2020-09-22/pdf/2020-20804.pdf. Find a discussion of public comments on the Rule and HRSA response at https://www.govinfo.gov/content/pkg/FR-2020-09-22/pdf/2020-20805.pdf.
NCC has released the third edition of the ESRD Patient Transplant Toolkit: Is a Kidney Transplant Right for Me? Patients share their transplant stories, including the risks and rewards of their experiences and insights they wish they had along the way. The Toolkit was designed by patients for patients. You can use this guide with your care team and loved ones as you learn to navigate the process to a kidney transplant. Find it at https://esrdnetworks.org/toolkits/patient-toolkits/is-a-kidney-transplant-right-for-me/at_download/file.
The HHS Health Resources & Services Administration (HRSA) Office of Regional Operations will present a webinar in English and Spanish to recognize Minority Donor Awareness Month (see https://www.hrsa.gov/enews/past-issues/2020/august-6/national-minority-donor-awareness-month and https://www.giftofhope.org/nmdam-2020/). The focus this year is on the Latinx community. Both versions are free to attend, but prior registration is required. All who register will receive a link to a recording of the webinar.
- HRSA Public Health Webinar Series: National Minority Donor Awareness Month, 11am-12:30 pm Aug 24, 2020. Find more information and register at https://www.eventbrite.com/e/hrsa-public-health-webinar-series-national-minority-donor-awareness-month-registration-115602673709.
- Serie de seminarios web sobre salud pública de HRSA: Mes Nacional para la Concientización de la Donación en Minorías, 11am-12:30 pm 28 de agosto de 2020. Find more information and register at https://www.eventbrite.com/e/mes-nacional-para-la-concientizacion-de-la-donacion-en-minorias-registration-116062888223.
For more information, contact HRSAORORegion7@hrsa.gov.
AAKP will present a 10am PDT 14 August 2020 HealthLine webinar on Understanding Genetic Conditions: What You Need to Know. For individuals who may be faced with inheriting a genetic condition, it’s important to know your family history, the different ways a genetic condition can be inherited, what genetic testing entails, and how you can work with your healthcare team to help manage the condition. The audio will feature genetic counselors as well as kidney patients with genetic conditions. Find details and register at https://register.gotowebinar.com/register/814066723276791822.
Find general information about HealthLine and recordings of earlier webinars, including their series of nine HealthLines on COVID-19 and…
- Vascular Access,
- Mental Health,
- Nutrition, and
- Clinical Trials,
The International Society of Peritoneal Dialysis (ISPD) has released guidelines on Strategies Regarding COVID-19 in PD patients, in English, Spanish, Mandarin, French, Polish, Hungarian, Portuguese, and Japanese, which can all be found at https://ispd.org/strategies-covid19/.
The ESRD NCC has released the resource 11 Things You Can Do to Get Ready for Kidney Transplant During COVID-19. Find it at https://esrdncc.org/globalassets/covid-19/eleventhingstransplantcovid19508.pdf in English, and https://esrdncc.org/globalassets/covid-19/eleventhingstransplantcovidsp508.pdf in Spanish.
The ESRD NCC has published a new 2-minute video on the risk of “High-KDPI” (Kidney Donor Profile Index, a measure of likely graft survival) kidneys for transplant and the advantage of earlier transplant which High-KDPI organs may enable. Find the video at https://www.youtube.com/watch?v=viFqw83IxiQ&t=17s or below:
AAKP HealthLine will present a June 23, 2020 webinar on Advancements in Monitoring Your Kidney Health Post-Transplant, on graft rejection and other possible challenges. Find more information and register at https://register.gotowebinar.com/register/618487792753441037.
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/.
The ESRD NCC will present a June 2, 2020 Patient Town Hall on You Too, Can Manage Transplant. Patients will share their experience with pre-transplant preparation, recovery, and adjusting to life after receiving a transplant. For details see below:
UCLA will present a May 17, 2020 Virtual CORE Kidney Health Fair and virtual 2K/5K Spirit Walk/Run. For more information and registration, see https://www.uclahealth.org/CORE-kidney/ and the poster below: