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NephCure
United States
Приєднався 26 січ 2007
NephCure’s mission is to empower people with rare, protein-spilling kidney disease to take charge of their health, while leading the revolution in research, new treatments, and care.
2024 NephCure Patient Summit | Highlight
Welcome to the NephCure Patient Summit!
The NephCure Patient Summit is an inviting, educational experience where those directly impacted by rare, protein-spilling kidney diseases can come together to connect, learn, share, and gain support when facing the unknowns of their disease.
With 255 attendees at this year's Patient Summit, 139 of these individuals attended for the very first time, learning more about their rare kidney disease and creating everlasting connections with others!
Our goal is to provide education, support, and hope to those living with rare kidney disease (RKD), through every event, program, and interaction.
Visit our website at NephCure.org to learn more about upcoming events and to prepare for next year's Patient Summit!
The NephCure Patient Summit is an inviting, educational experience where those directly impacted by rare, protein-spilling kidney diseases can come together to connect, learn, share, and gain support when facing the unknowns of their disease.
With 255 attendees at this year's Patient Summit, 139 of these individuals attended for the very first time, learning more about their rare kidney disease and creating everlasting connections with others!
Our goal is to provide education, support, and hope to those living with rare kidney disease (RKD), through every event, program, and interaction.
Visit our website at NephCure.org to learn more about upcoming events and to prepare for next year's Patient Summit!
Переглядів: 59
Відео
Living with IgA Nephropathy: The Personal Stories of Four Rare Kidney Disease Patients
Переглядів 25521 день тому
IgA Nephropathy (IgAN) is a rare kidney disease that causes inflammation in the kidney's filtering units, which can result in kidney damage and may lead to kidney failure. For many patients, a journey with IgAN is a difficult one. Hear the stories of patients from different backgrounds and lifestyles who have dealt first-hand the challenges that come with living with a rare kidney disease. To l...
APOL1 Awareness Day Town Hall | Things To Know About APOL1
Переглядів 80Місяць тому
On April 30th, Montrez Lucas, NephCure's Associate Director of Patient Navigation, hosted an insightful town-hall webinar where expert speakers delved into a crucial aspect of healthcare for Black Americans - understanding APOL1 and its impact on kidney health. This event aims to raise awareness about APOL1, share vital knowledge about the gene, discuss testing and screening options, and unders...
FSGS and Nephrotic Syndrome | Research Funding Opportunities
Переглядів 1652 місяці тому
Hosted by Britta Dornan, NephCure's Executive Director of Strategic Relations, dive into 2024 researcher-physician related resources made possible through advocacy led by NephCure! Special guest Dr. Kathryn Argue, the Deputy Program Manager of the Peer Reviewed Medical Research Program (PRMRP) at the Department of Defense's Congressionally Directed Medical Research Programs, presents a comprehe...
Kidney-Friendly Nutrition | Patient Summit Cooking Seminar
Переглядів 2055 місяців тому
Join Chef Sachet Walker and Chef Duane Sunwold as they share invaluable insights on maintaining a kidney-friendly diet without compromising on taste or nutrition. From understanding essential dietary restrictions to crafting delicious alternatives, they'll guide you through every step with expertise and passion. Discover their exclusive recipe for homemade protein bars tailored to suit renal di...
Recap: Fireside Chat with NORD on the New IgAN Patient Assistance Program
Переглядів 1156 місяців тому
In case you missed it, here's a recap of our enlightening fireside chat that took place on December 12th at 7:30pm ET! Montrez Lucas from NephCure interviewed Jill Hollander, the Vice President of the National Organization for Rare Diseases (NORD), about the innovative IgA Nephropathy (IgAN) Patient Assistance Program. During this engaging webinar, we reviewed NORD's financial assistance progra...
Two Brothers, Same Rare Kidney Disease | Meet Tyler and Jaxon
Переглядів 1367 місяців тому
Meet Tyler and Jaxon Levondosky, two brothers with the same exact genetic mutation that causes a very rare, progressive (and currently untreatable) version of rare kidney disease. Both boys showed symptoms as infants, however, Jaxon wasn’t diagnosed until he was 18 months old, and Tyler at 4 years old. This particular genetic mutation is known to cause kidney failure within the first two decade...
Strategies for Coping with Rare Diseases | NephCure Patient Summit 2023
Переглядів 1569 місяців тому
NephCure's Patient Summit of 2023 hosted several key speakers to engage patients and families on rare kidney disease (RKD) education. Dr. Al Freedman, a psychologist and father to a son living with a rare disease, spoke on various strategies and coping mechanisms with rare diseases to educate the RKD community and answer difficult questions surrounding mental health. Visit NephCure.org to learn...
NephCure Patient Navigation Q&A with Sampson Lab
Переглядів 1129 місяців тому
Thanks to The Sampson Lab for Kidney Genomics, our Associate Director of Patient Navigation, Montrez Lucas, was able to discuss the possibilities and services granted by our Patient Navigation Program, geared toward rare kidney disease patients and their caretakers. To learn more about our Patient Navigation program, visit our website at NephCure.org
Back To School Patient Panel | How to Navigate RKD in Schools
Переглядів 7510 місяців тому
On August 30th, 2023, we brought together a group of dedicated parents who have firsthand experience in advocating for their youth within the school systems. In this webinar, our panelists will share their valuable insights, tips, and best practices to help the community effectively advocate for their children’s needs in the school environment. We’ll specifically delve into the essential topic ...
Silicon Valley Pig Jig 2022 Recap
Переглядів 16510 місяців тому
NephCure's Silicon Valley Pig Jig 2022! A dynamic fundraising event featuring a BBQ competition benefitting NephCure. To learn more about Pig Jigs or to find other ways to get involved, visit NephCure.org!
Rare Kidneys On The Hill Day || NephCure Briefing
Переглядів 21911 місяців тому
This briefing is part of Rare Kidneys on the Hill Day, an event hosted by NephCure that unites individuals and families affected by rare kidney disease (RKD) to advocate for policies that address the challenges they face, including diagnosis, research, and access to treatments. This briefing covered topics such as: • The prevalence and patient impact of rare kidney disease and its significant c...
Rare Kidneys On The Hill Day | NephCure Hill Day Highlights
Переглядів 33511 місяців тому
Rare Kidneys On The Hill Day | NephCure Hill Day Highlights
Preventing Caregiver Burnout | NephCure Patient Summit 2023
Переглядів 98Рік тому
Preventing Caregiver Burnout | NephCure Patient Summit 2023
Mental Health and Rare Kidney Disease: The Hope that Lies Ahead
Переглядів 245Рік тому
Mental Health and Rare Kidney Disease: The Hope that Lies Ahead
Paul W. Caine Foundation - Health Inequity: Advocating for Life
Переглядів 76Рік тому
Paul W. Caine Foundation - Health Inequity: Advocating for Life
Understanding Rare Kidney Diseases: The Role of Genetic Testing
Переглядів 468Рік тому
Understanding Rare Kidney Diseases: The Role of Genetic Testing
New Look, Same NephCure | Unveiling Our New Logo
Переглядів 70Рік тому
New Look, Same NephCure | Unveiling Our New Logo
Morea Cummings: Congenital Nephrotic Syndrome Journey
Переглядів 2,3 тис.Рік тому
Morea Cummings: Congenital Nephrotic Syndrome Journey
NephCure's 2022 New York Countdown to a Cure
Переглядів 202Рік тому
NephCure's 2022 New York Countdown to a Cure
A New Future for Rare Kidney Disease: One Teen's Journey with FSGS
Переглядів 4,3 тис.Рік тому
A New Future for Rare Kidney Disease: One Teen's Journey with FSGS
Back to School Support Webinar 2022 with GLEAN
Переглядів 91Рік тому
Back to School Support Webinar 2022 with GLEAN
NephCure U: How to Take Control of Your Rare Kidney Disease
Переглядів 913Рік тому
NephCure U: How to Take Control of Your Rare Kidney Disease
The Role of the Complement System in IgA Nephropathy, C3G, & Membranous Nephropathy
Переглядів 1,6 тис.2 роки тому
The Role of the Complement System in IgA Nephropathy, C3G, & Membranous Nephropathy
MCD vs. FSGS: Breakdown of Diagnostics and Clinical Course
Переглядів 1,8 тис.2 роки тому
MCD vs. FSGS: Breakdown of Diagnostics and Clinical Course
Predictors of Disease Progression: Biomarkers & Treatment Response in Children
Переглядів 1902 роки тому
Predictors of Disease Progression: Biomarkers & Treatment Response in Children
NephCure U: A New Era with Dr. Blair Kiser
Переглядів 2962 роки тому
NephCure U: A New Era with Dr. Blair Kiser
Very Informative video, Thank you.
recipe?
From diagnosis to kidney failure took me 12years. Tried many options, helpless. Luckily got kidney, filling better but got another problems using anti rejection pills, at least I'm alive
I was diagnosed with FSGS at age 4. They want to put me on dialysis soon.
What is the initials of your disease mean? I've never heard of it
Please send a list of foods good for kidneys Delores Wright
I also agree with the moderation, today this tomorrow another suggestion. Almighty God is ONLY our Healer.
Thanks
THANK YOU FOR SHARING THIS INFORMATION ℹ️.....
I have alport sydrome . Which is a kidney disease
All the fruits and vegetables have been poisoned in one way or another and they all taste like shit ! No flavor and like eating a bag of fertilizer , bill gates sprays his poison all over everything , they have no nutritional value at all , total bunk ! Eat meat and take Shaklee concentrated food supplements and forget eating all this cheap animal feed
WE ARE LAB RATS & MOST people did NOT NEED PLANDEMIC VAXX.S
Hello I was recently diagnosed with MN and this video has been very helpful and informative in explaining my diagnosis. I'm only hoping that eventually I'll go into remission so I'm staying positive.
S was casa weeds
Nephilim cure?
Can someone tell me can you eat potatoes or no ?????????
I Have FSGS When I Was 14 I’m 29 Now
I had FSGS when i was 14 too I am 20 now…What are the things you’re doing to take care of your kidneys?
Did it went back?
Seems like yesterday,
Sure cereals and grains brilliant! lol.
Actually what i will be sharing now ,many of you not believe but my NS was completely cured after I started working out with cardio i ran and ran everyday and ate healthy and i kept close eye on my excretory functions and i think because of that it is gone from my life and i insist that all of you try this eat healthy keep your weight always in control ,if blood flows in your system nothing can hurt you ,we all know the that this medical industry is ruthless and most of us are sick because of them they can never treat you because we are a hen who lays golden egg for them ,if you can believe me than do the part of running and eating healthy you won’t see any sign of disease.
They want to remove both my daughters kidneys then give her a transplant i eant stem cells first but they wont consider it yet unless she has a failed transplant first smh
I was healthy till a product gave me a swelling reaction. then injected with dexamethisone the greatest danger destroyed my life now 6 years so far and re covery is giving up. they don't dare give me more or level my cortisol or repare induced adrenal damage but you can't live with waking death like shaking for hours be for it slows down and other horrid issues loosing every thing including skill in life .
my doctors have no clue what your teaching is strange ? or the reason they won't treat this because it cause more injury than better .
Thank you Dr. Am a patient with lupus am experiencing this back pain
Masturbation can effect on kidney
Masturbation can affect on kidney
Yes
You sound dumb
🥰😍😘
I’m in good shape because I eat Fruity Pebbles for breakfast every morning.
My son has been diagnosed with this. What meds are you on can share
How old is your son? My daughter just got diagnosed she’s 10 😢
@@neriskaren my son is 16
What about PRAL of tahini and peanut butter?
Great content
Thank you so much. Within a year I Will be doctor and it Will be so prestigious to help humans
isn't Sodium BiCarbonate high in salt?
Tears running down my face I'm so touched I'm due for my checkup too. How are things with you now? I may be suffering from this too and I'm very worried as well. Feel for you brother 👍👍💯
I got neprotic syndrome when i was 18 now I'm 23 I'm suffering from almost 6 years
Says that Tofu has improved his cholestrol but what about his LDL? Has that lowered too? most likely not. And keep eating spinach and you'll end up with kidney stones! just a very bias presentation imo.
Its a humble request...Dear sir/madam can I use steam sweating bath to overcome FSGS KIDNEY DISEASE... please reply... Its a humble request
Dear sir, can I use steam sweating bath to overcome FSGS KIDNEY DISEASE... please reply
I put Cran cherry juice. Cabbage strawberries blueberries apple. In the blender, every morning. It tastes great. Yall try it.
Question: is Himalayan pink sea salt ok to eat on plant based diet?
Very practical!
I have a kidney stone
I'm proud to say I wan one of the youngest patients my dr had do this
I lost my 5 year old hero 2 years ago to FSGS/Nephrotic Syndrome and I want to personally thank you NephCure for all you do and especially the help you give to advocate and spread awareness. 💚
Big thanks to Dr emuakhe on UA-cam from Africa for having every criteria to human health, his kidney cleansing herbs saved my dad's lives from the unfortunate situation..................
Now .....how are u sister
I was just diagnosed with FSGS at 23. Changed everything for me but I am accepting it and on my 4th week of Prednisone. Got so much I want to do in this life and I won’t be stopped by this disease.
❗ *Promo SM*
What’s the medication
Dr Omole on UA-cam is a powerful herbal doctor that cures herpes from me with his herbal product