National Kidney Foundation Partners with Alport Syndrome Foundation to expand First-Ever National Registry for Patients at All Stages of Kidney Disease

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“A new partnership between the National Kidney Foundation (NKF) and the Alport Syndrome Foundation (ASF) is designed to give hope to the thousands of patients, including children and their families, who suffer from debilitating Alport syndrome, a rare genetic kidney disorder. 

NKF and ASF will collaborate on the NKF Patient Network – Alport Syndrome, a new sub-registry devoted to Alport syndrome patients within the NKF Patient Network, a registry for people with all stages of kidney disease. The NKF Patient Network is the only kidney disease registry that has both patient-entered data combined with electronic health records (EHR). Patients with all stages of kidney disease can register and add their important health information. The unique digital platform is designed to improve the lives of people with kidney disease by better informing research, clinical care, drug development, and health policy decisions, as well as give kidney patients the tools they need to stay educated and healthy.”

Learn more, here.

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FDA decision on booster shots for immunocompromised expected soon

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“The nation’s top infectious disease doctor says he believes booster shots for the COVID-19 vaccine should be given “reasonably soon” to people with weakened immune systems.

“We need to look at them in a different light,” Dr. Anthony Fauci said on CNN’s ‘Fareed Zakaria GPS’ on Sunday. “We would certainly be boosting those people before we boost the general population that’s been vaccinated, and we should be doing that reasonably soon.”

The comments from the lead medical adviser to the White House on the pandemic are a change in messaging from about a month ago.”

Read more, here.

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Heart Surgeon Serves Up Healthy Italian Food Tips

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“In the land of carb counting, a pasta advocate can be hard to find. Look no further than Dr. Alfredo Trento at the Smidt Heart Institute, who did Cedars-Sinai’s first heart transplant in 1988 and has loved Italian cooking a lot longer than that.

Dr. Trento grew up in Italy, and the love of his life, Robin, spent much of the first year of their marriage learning about one of his other great loves: his mother’s cooking. Versions of those recipes—now with Robin’s own flair—still form the staples of their meals today, drawing inspiration from what’s in season.

A great meal doesn’t necessarily require a trip to the farmers market. Chat with Dr. Trento for a few minutes, and he’ll have you scouring your kitchen cupboards for the makings of a mouth-watering meal that’s as kind to your heart as it is to your palate.”

Read more and find recipes, here.

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National Kidney Foundation and Labcorp Data Show Millions Aren’t Tested for Kidney Disease

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“New data suggest that millions of patients most at-risk for life-threatening kidney disease are unaware they have it because they are not tested according to clinical practice guidelines despite their risk. The study, by authors from the National Kidney Foundation (NKF) and Labcorp, appears today in the journal Diabetes Care.

In the study, “Chronic Kidney Disease Testing (CKD) Among At-Risk Adults in the U.S. Remains Low: Real-World Evidence from a National Laboratory Database,” investigators reviewed laboratory ordered CKD tests from more than 28 million patients with diabetes, hypertension (also known as high blood pressure), or both, that were tested by Labcorp between 2013 and 2018.”

Read more, here.

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Home is where the heart is: This CNN Hero is housing transplant patients near their hospitals

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“Twelve years ago, Ava Kaufman was fighting for her life. Now, thanks to a donor heart and successful organ transplant, she’s alive — and saving others.

“My life changed on a dime,” said Kaufman, who was a professional dancer and black belt in taekwondo when an autoimmune disease went undiagnosed and wiped out her muscular system. She ultimately ended up on life support in intensive care with organ failure.

“I went from living this big life to not knowing how I was going to survive.”

In what she calls a series of small miracles, Kaufman was given a second chance at life.”

Read the full story, here.

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Should You Recommend a COVID Booster to Patients?

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“Certain at-risk groups need to consider extra protection now.”

What’s the Current Booster Landscape?

“Several studies offer preliminary evidence on the benefits of boosters, especially for certain populations. A recent French study in JAMA showed that about 50% of 159 kidney transplant patients with low or no measurable antibodies after two doses of an mRNA vaccine mounted a response with a third shot, and with no serious side effects or rejection episodes. A study in the Annals of Internal Medicine also showed the benefits of a third dose in solid organ transplant patients. Pfizer data (that has not yet been peer reviewed) show antibody levels rise 11-fold in patients ages 65 to 75 after a booster.

Around the world, some countries and localities have gotten an early start on boosting. Boosters are being offered to patients over 60 years old in Israel. France is giving a booster dose to the severely immunocompromised 4 weeks after the second dose, and Hungary, Turkey, Thailand, Bahrain, and the United Arab Emirates are starting booster programs. The Mississippi Health Department is now recommending physicians consider boosters for the immunocompromised.”

Read more, here.

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Diabetes Patients on Dialysis See Better Sugar Control With Artificial Pancreas

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“Adults with type 2 diabetes and end-stage renal disease requiring dialysis benefitted from an artificial pancreas in a small, randomized crossover trial.

Patients using a fully automated closed loop system spent a longer amount of time in target glucose range versus those using standard insulin therapy (52.8% vs 37.7%, respectively, P<0.001), reported Charlotte Boughton, MD, PhD, of University of Cambridge Metabolic Research Laboratories in England, and colleagues.”

Read more, here.

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Man’s Sudden Heart Failure Led to US’ First Artificial Heart Transplant

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“Rachel Moore thought her husband Matthew was pulling one of his usual stunts. The 39-year-old, who’d won Rachel over almost 14 years before with his sly wit, suddenly slumped over in his hospital recliner at Duke University Hospital, where he’d arrived June 15 expecting to undergo heart bypass surgery

But when she saw her husband’s tongue sticking out and his eyes dilate, “I started screaming,” Rachel, a nurse, told Insider.

For 45 minutes, clinicians performed chest compressions. They shocked his heart 16 times. Finally, he stabilized, but his life remained in danger for weeks as machines — and five more shocks — kept him alive.”

Read more, here.

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Howard University Surgeon Clive Callender Heralded for Minority Organ Transplantation Achievements

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“Legendary Howard University transplant surgeon Dr. Clive O. Callender has been honored by the 2021 American Society of Transplant Surgeons (ASTS) with its Pioneer Award, the most distinguished award bestowed by the organization upon an individual. The award comes as National Minority Donor Awareness Month is observed in the month of August. 

In a video message announcing the award, ASTS past president Dr. Marwan Abouljoud said that when he started his career 28 years ago in Detroit, all of his learnings and readings on transplant awareness and organ donation kept leading him back to the works of one individual.”

Watch the video and read more, here.

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National Minority Donor Awareness Month

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“National Minority Donor Awareness Month is a collaborative initiative of the National Organ, Eye and Tissue Donation Multicultural Action Group (NMAG) to save and improve the quality of life of diverse communities by creating a positive culture for organ, eye and tissue donation. National Minority Donor Awareness Month stems from National Minority Donor Awareness Week, founded in 1996 by the National Minority Organ Tissue Transplant Education Program (MOTTEP) to bring heightened awareness to donation and transplantation in multicultural communities  focusing primarily on African American, Hispanic, Asian/Pacific Islander and Native American communities.”

Learn more about upcoming events, here.

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