As the new school year approaches, we understand the unique challenges faced by families in the rare kidney disease community. Watch this empowering and informative “Back to School” webinar designed to equip you with the knowledge and tools to ensure your child receives the support they need.
This NephCure lead town hall consists of a patient parent panel, information regarding 504 plans/IEPs as well as tips on how to request a specialized diet for your RKD youth as they embark upon a new school year.
Learn firsthand from those who have navigated the system and gain valuable insights to help you manage your own insurance journey. This webinar dives into key aspects of insurance access, featuring a panel of patients sharing their personal stories, including their struggles, victories, and practical tips for overcoming insurance challenges.
You will learn some actionable strategies from those who have successfully navigated the complexities of the insurance system. Whether you’re facing insurance hurdles yourself or seeking to better understand the process, this webinar can educate, support, and guide you.
Montrez Lucas, NephCure’s Associate Director of Patient Navigation, recently led a heartfelt discussion with patients on the mental health challenges of living with rare kidney disease.
This powerful panel dives deep into the emotional toll of their journeys, offering candid insights into the struggles they face. Through their shared vulnerabilities, these patients provide a compelling reminder of the unseen battles that accompany rare kidney diseases.
Follow this step-by-step instructions for kidney-friendly strawberry cupcakes. This video walks you through the preparation process, highlighting the use of ingredients that are safe for your kidney health. It features mixing the batter, incorporating fresh strawberries, and baking the cupcakes to perfection.
Additionally, this video provides tips on selecting kidney-friendly ingredients and suggests ways to enjoy these delicious treats while maintaining a kidney-healthy diet. This recipe is a delicious and nutritious option for those focusing on their kidney health.
1. Set butter, eggs and rice milk out to warm to room temperature. Preheat the oven to 350°F. Place cupcake liners in a 12-cup muffin tin; set aside. 2. Process strawberries in a small food processor until pureed to make approximately 1/3 cup of puree. 3. In a medium bowl, combine white and brown rice flours, baking powder, and salt; set aside. 4. In a small bowl, combine rice milk, vanilla, and strawberry puree; set aside. 5. Cream butter on medium-high speed with an electric mixer, until light and fluffy. Gradually add sugar and continue to beat until well combined and fluffy. Reduce the mixer speed to medium and slowly add egg and egg whites until just blended. 6. With the mixer on low, slowly add half the rice flour mixture; mix until just blended. Add the milk mixture; mix until just blended. Slowly add remaining rice flour mixture, scraping down sides of the bowl with a spatula, as necessary, until just blended. 7. Pour batter into muffin cups. Bake until the tops are just dry to the touch, 22 to 25 minutes. Place muffin tin on a wire rack and let cupcakes cool before removing from tin.
Follow step-by-step instructions on how to make kidney-friendly chicken nuggets, perfect for focusing on your kidney health. The video guides you through the preparation process, showing you how to season, bread, and bake kidney-healthy chicken nuggets to golden perfection.
Highlighting the use of ingredients that supports a kidney-healthy diet and provides valuable tips on selecting kidney-friendly options. To enhance the meal, the video suggests nutritious side dishes, ensuring a balanced and healthy dining experience for those prioritizing their kidney well-being.
1. Preheat the oven to 400 °F. 2. Cut chicken breast into bite-sized pieces. 3. In a large mixing bowl, combine seasoning, eggs, and chicken. Coat the chicken pieces evenly. 4. Pour bread crumbs into a Ziploc bag, then add chicken and toss until evenly coated. 5. Bake nuggets on a baking sheet sprayed with nonstick cooking spray for 20 minutes or until internal temperature reaches 165 ºF. 6. Serve with homemade honey mustard dipping sauce.
The video features a quick and easy recipe for fish tacos following a kidney-friendly diet. It emphasizes the importance of using ingredients that support kidney health, showcasing step-by-step instructions on preparing the dish.
It includes visuals of fresh fish being seasoned, cooked, and assembled into tacos with fresh toppings, offering a delicious and nutritious meal option for those mindful of their kidney health.
1 Tbsp. canned chipotle pepper like chillis in adobo
1 ½ tsp. chili powder
¼ cup mayonnaise
½ cup sour cream 2 limes, 1 halved and 1 cut into wedge
2 Tbsp. chopped cilantro
1 cup fresh chopped pineapple
1 small red onion
1 jalapeño
2 cloves garlic, minced
1 cup shredded green cabbage
½ cup shredded carrots
8 fresh corn tortillas
Directions:
1. Preheat the oven to 400 ºF. Lightly grease a baking sheet. 2. Season fish with canned chili, chili powder and the squeezed juice of 1/2 a lime. Bake for 15 minutes or until f ish is firm and cooked through. 3. In a mixing bowl, combine mayo, sour cream, squeezed juice of 1/2 a lime, and 1 Tbsp. cilantro. Refrigerate until needed. 4. In another bowl, combine chopped pineapple, onion, jalapeno, lime juice, cilantro and garlic, then refrigerate until needed. 5. Thinly chop cabbage and toss with dressing and shredded carrots. Refrigerate until needed. 6. Remove fish from oven, toast tortillas and make tacos using pico and cabbage slaw.
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 learn more about IgAN and see important resources that can support you or a loved one, visit our IgAN Kidney Disease page.
and learn why prednisone is a double-edged sword for many patients with protein-spilling kidney diseases. While we know Prednisone may be helpful to some, this treatment option comes with many unpleasant side effects.
Listen to Dr. Julie Ingelfinger, the author of Coping with Prednisone (and other cortisone-related medicines), as she discusses the only book for patients on coping with the symptoms of Prednisone.
Is your child affected by rare kidney disease? Did you know that the process for transitioning your child to adult nephrology should start years before it ever happens? Dr. Roshan George can help.
As the Director of the Renal Transplant Transition Program at Emory, Dr. George discusses how to navigate this transition.
And learn about the process of transitioning your child to adult nephrology. In this video, Dr. Roshan George explains why this transition should start years before it happens.
And learn from an expert of kidney biopsies, Dr. Chris Larsen from Arkana Labs. Dr. Larsen talks about everything from biopsy to diagnosis– and why the person who reads your biopsy is so important.
You’ll also get an inside and behind the scenes look of Arkanas Labs!
Dr. Larry Beck from Boston University for an informative session regarding the latest advancements in MN, including new treatment guidelines. Watch this video to learn about the quickly changing Membranous Nephropathy landscape.
Join Dr. Susan Massengill from Levine Children’s Hospital in Charlotte, North Carolina share the basics of nephrotic syndrome.
You will leave this session with a better understanding of nephrotic syndrome, it’s history, how it impacts the kidneys, how the kidney’s impact a patient, and best practices when treating and living with nephrotic syndrome.
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