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Understanding Rare Kidney Diseases: The Role of Genetic Testing

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Genetic testing is changing the face of medicine. It’s no longer an expensive, out-of-reach option in your diagnostic journey! On Thursday, April 13 at 8 p.m. ET, we were joined by expert nephrologist, Dr. Joshua Zaritsky, to discuss genetics in rare kidney disease (RKD). Some of the topics included:

1. How genetic testing can impact your RKD diagnosis

2. How it can change the treatment course of your disease

3. How to affordably and easily access genetic screening for RKD.

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Patient Panel | Mental Health & Rare Kidney Disease

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For Mental Health Awareness Month, NephCure hosted a patient panel focusing on mental health and rare kidney disease. Our patient panelists shed light on the mental health struggles that many RKD patients experience, but also share the hope laced throughout their journeys. Moderated by Montrez Lucas, NephCure’s Associate Director of Patient Navigation, this mental health discussion spotlights the panelists’ coping skills, support systems, and how they continue to brave their physical health battles in the midst of anxiety, depression, and stressors.

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Preventing Caregiver Burnout

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NephCure Patient Summit 2023

Jessica Patay is the founder and executive director of We Are Brave Together (WABT) and a champion of self-care practices and their positive effect on caregivers.

During the 2023 NephCure Patient Summit, Jessica discussed how to combat the isolation and burnout that accompanies caring for loved ones with serious, rare, and chronic conditions.

Listen in to hear how creating supportive, resourceful, and empowering communities and meaningful connections can strengthen and equip you and your family to cope for the long haul!

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Patient Panel | How to Navigate RKD in Schools

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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 of navigating the 504 plan process, ensuring that students with rare kidney disease (RKD) receive the support they require.

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Strategies for Coping with Rare Diseases

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NephCure Patient Summit 2023

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.

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Fireside Chat with NORD on the IgAN Patient Assistance Program

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A recap of Montrez Lucas’ interview with 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 program, exploring how it can provide crucial support for those affected by IgA Nephropathy. From assistance with insurance premiums and co-pays to aiding with diagnostic testing and offering travel support for clinical trials or consultations with disease specialists, NORD’s program was introduced as a valuable resource.

Watch this insightful and empowering webinar aimed to alleviate the challenges associated with managing IgAN by equipping participants with valuable information and resources. Stay tuned for more updates and be sure to subscribe for future webinars that provide ongoing support for the IgA Nephropathy community and visit our events page for upcoming webinars.

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If you or your loved ones are dealing with IgAN, this is a resource you won’t want to miss!
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Kidney-Friendly Nutrition | Cooking Seminar

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Chef Sachet Walker and Chef Duane Sunwold 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.

Whether you’re managing kidney health or simply seeking nutritious culinary inspiration, this cooking segment is a must-watch. Get ready to elevate your cooking skills and nourish your body with Chef Sachet and Chef Duane’s kidney-friendly creations!

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