NephCure

Today, we are pleased to announce a positive outcome with the U.S. FDA in our investigational drug program meeting, which studies the potential treatment for those living with Immunoglobulin A nephropathy (IgA nephropathy) in adults. Following the meeting, Otsuka will submit a Biologics License Application (BLA) for FDA consideration in early 2025. At Otsuka, our continued work in nephrology is fueled by a relentless curiosity and a promise to ensure that patient populations with high unmet needs receive the most advanced nephrology care possible. Read more: https://bit.ly/494tRzC

New research from the #NephroticSyndrome Study Network (NEPTUNE): ✅ Exploring How Residential #AirPollution Affects Disease Progression in Patients with Primary #GlomerularDisease Listen and read more: https://lnkd.in/griaSe8w

We are bestowed an unparalleled honor by being the Bronze Anthem Winner for The Anthem Awards! NephCure was awarded bronze in the non-profit health sector for our incredible work in APOL1 kidney disease awareness. We originally launched the inaugural National APOL1 Kidney Disease Awareness Day to raise awareness and promote early detection of this genetic condition that predominately affects the Black community. Partnering with 10+ community sites, including HBCUs and faith-based organizations nationwide, we distributed educational materials, hosted kidney screening events, held a virtual town hall with doctors and patients, and engaged communities on social media to amplify knowledge and drive action. We're thankful for this recognition and to our team who worked incredibly hard on this campaign, including Kylie Karley, Montrez Lucas, Maurice Madden, Destiny LaLonde, and especially Imante Eichelberger, who took this campaign to the next level and helped create a true difference in raising visibility and create meaningful conversations about kidney health. Learn more about our campaign below: https://lnkd.in/gurWZGBQ #AnthemAwards #APOL1

Two years ago we set out on a mission to differentiate rare kidney disease (RKD) from chronic kidney disease (CKD). Today was a full circle moment for me personally seeing “Rare Kidney Disease” in the headline of this Kelly Clarkson Show segment! Also exciting to validate how the NephCure community supports RKD families! I am forever grateful to families who share their stories and raise awareness! It’s such a pleasure to know families like the Cabison’s and watch kids like Zane grow and shine through their challenges. I remember when Zane was an adorable little toddler being pushed around in a stroller and now he’s break dancing in front of America 👏👊😍 https://lnkd.in/gJersTzd

Meet Imanté. He joined the Marketing & Communications team as a Coordinator in March of 2024. We asked him a few questions about his time with NephCure. Here is what Imanté had to say: What are your favorite projects you've been a part of at NephCure? I absolutely loved being a part of the APOL1 Awareness Day as well as the IgAN Empowerment Campaign this year. Participating in these initiatives not only allowed me to contribute to important causes but also presented me with a series of welcome challenges that pushed me to expand my skills and knowledge. Each event was an opportunity for personal and professional growth, as I collaborated with passionate individuals who share a commitment to raising awareness and empowering others. What are some of your best accomplishments while at NephCure? Some of my proudest accomplishments during my time at NephCure include the impressive turnout at our webinars, such as APOL1 Awareness Day and IgAN Awareness Day. Seeing so many attendees come together to learn and engage with these critical topics was incredibly rewarding. It wasn't just about the numbers; it was about fostering a sense of community and shared purpose among participants. Additionally, I am thrilled by the number of new patients who were able to join our community through the IgAN Patient Empowerment Campaign. Together, these achievements reflect our commitment to raising awareness and building a supportive network for those affected by kidney diseases. What is your favorite part about working with NephCure? My favorite part about working with NephCure is undoubtedly the people. We are not just colleagues; we are truly a community and a family united by a common purpose. Together, we dedicate ourselves to making strides in the "silent fight" against rare kidney diseases, and this shared mission fosters a deep sense of camaraderie among us. Every day, I am inspired by the hard work and passion that everyone brings to the table. It’s not just a job for us; our hearts are fully invested in the cause. The patients we serve are the reason we do what we do. They know we are fighting alongside them, and that connection makes our work meaningful.

Tampa Pig Jig 2024 was a huge success! When I was first diagnosed with Focal Segmental Glomulersclerosis (FSGS) at age 26 in 2017, I felt completely hopeless. The average nephrologist sees only 1 rare kidney disease case PER YEAR and there are only 7 in 1,000,000 people with this disease. At the beginning of my journey, I saw a couple of nephrologists before attending the Pig Jig and speaking with the president of NephCure who connected me with the top FSGS doctors in Florida. Since then, they have supported my care and ensured I have remained stable the last few years. A true miracle compared to the normal disease trajectory. I remain so thankful to both NephCure and the Pig Jig…as well as all the company sponsors across Tampa! This event raises money for the only nonprofit organization committed to supporting research, improving treatment, and finding a cure for FSGS. We are at a turning point and revolution right now with so many clinical trials and pharmaceutical treatments on the horizon. Thanks to NephCure and The Pig Jig for creating hope for us rare unicorns 🦄

“I’ve heard some people say that hope is not a strategy. I disagree. Sometimes hope is all you’ve got,” said Eric Dube at NephCure’s 20th annual Countdown to a Cure gala in NYC earlier this week, where he and others were honored for their impact in #RareKidneyDisease. The moving event brings together donors, physicians, patient families, industry supporters, and friends to support NephCure’s mission. Together with NephCure, we will continue to work to translate hope into reality. #InRareForLife

Back on the East Coast and I had a wonderful time at NephCure Countdown to a Cure dinner! Congratulations to the NephCure team on a great event and kudos to Eric Dube on the Medical Professional of the Year award. Your leadership and personal commitment to rare disease is an inspiration!

This just made my day, my week, my year! THREE rare kidney disease advocates are among the RareVoice Award finalists announced today – all of whom NephCure has been honored to work alongside: FDA Deputy Director of the Division of Cardiology and Nephrology, Center for Drug Evaluation and Research Dr. Aliza Thompson for her work in shepherding a clinical trial endpoints project that is a game changer for drug development in the rare renal space (this means kidneys and lives saved!), Texas State Senator Kelly Hancock - an IgAN patient whose life was saved by transplant and who inspired his colleagues to support and sign into law a living organ donor education program (with bipartisan support, yes this is still possible!), and the indominable Soler Family who have let nothing get in the way of advocating for H.R. 6790 the New Era of Preventing End Stage Kidney Disease Act (the only federal bill focusing on policies that impact rare kidney disease patients!). Thank you, EveryLife Foundation for Rare Diseases and the nominations committee for recognizing these advocates and the incredible progress that is being made toward improved diagnosis, treatments and care in the rare renal space thanks to dedicated patients, families, researchers, clinicians, pharma companies, the FDA, and elected officials. Matthew JohnsonChristopher PorterRose Gallagher (Avellino)Kelly HelmKylie KarleyDestiny LaLondeShayne G. Woods Caitlin Van Sant Stephen GroftWendy ErlerLauren EvaKelsey PlemmonsLaurel DamashekAshley JohnSara StevensTara Hastings

I had an incredible time at the American Society of Nephrology (ASN) conference this weekend. It was an amazing opportunity to connect with fellow professionals, exchange knowledge, and gain insights into the latest advancements in kidney health. #ASN #Nephrology #KidneyHealth #Networking #patientadvocate