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The 2024 NephCure Patient Summit and Youth Summit brought together an enthusiastic and powerful assembly of the rare kidney disease (RKD) community, setting a tone of unity and progress. This year’s event took place in San Antonio, Texas, from May 9th – May 11th. The Patient Summit brought together 255 attendees (139 first-time attendees), ranging from patients, caregivers, industry partners, specialists, and more.
Over the course of the three-day event, our community learned about the significant advancements in the rare kidney disease space, created an environment of support and highlighted the continued need to ensure innovations benefit all patients.
The Patient Summit kicked off on Thursday with great enthusiasm. NephCure’s Chief Executive Officer, Josh Tarnoff, welcomed attendees with an engaging opening session. The session began with an update on NephCure’s recent activities and outlined the organization’s priorities for the rare kidney disease community. The atmosphere was vibrant, fostering new friendships and strengthening existing bonds within the community.
Friday, the first full day of the 2024 NephCure Patient Summit, began with an opening session that set the stage for an informative and inspiring event. NephCure’s board president, Michael Levine, welcomed attendees and introduced the Summit theme, leading into the following sessions.
The importance of a collaborative patient-provider relationship was highlighted in a session led by Dr. Sreedhar Mandayam. He presented “a day in the life” of a nephrologist, emphasizing the role of activated patients in their care. The discussion underscored how patient empowerment is vital in keeping pace with innovations in the rare kidney disease space.
Attendees participated in physician-led breakout sessions. The sessions explored topics such as RKD Clinical trials, innovations in transplants and the importance of genetic testing.
In between attending physician-led breakout sessions, there were two panel sessions. The first was a patient and healthcare provider panel about improving patient outcomes through effective patient-provider relationships. The second panel, “Turning Adversity into Action”, featured patients and Texas Sen. Kelly Hancock. This session focused on the power of grassroots activism and government advocacy. The session aimed to inspire attendees to embrace advocacy as a powerful tool for driving change in the RKD community.
The final day of the 2024 Patient Summit, Saturday, emphasized the importance of strengthening connections within the community. Patients did everything from attending support groups to learning about art therapy and kidney-healthy cooking.
In the afternoon, key-note speaker, Allison Massari, shared her profound insights on developing a resilience mindset. Drawing from her personal journey of recovery as a burn survivor, she highlighted the essential qualities needed to remain vibrant, alive, and in control of one’s life, even in the face of adversity.
As the 2024 NephCure Patient Summit concluded, various NephCure staff members discussed upcoming opportunities and programs created by NephCure, providing valuable information on how to stay connected after the Summit. This final gathering offered a sense of community and continuity, ensuring participants felt supported and informed as they returned to their individual lives.
The 2024 NephCure Patient Summit underscored the importance of community activation, with a shared commitment to ensuring that all rare kidney disease patients benefit from ongoing innovations. Participants left the event inspired and equipped to continue the momentum toward improved access and care. Thank you to everyone who joined and contributed to this significant gathering.
The Summit’s success was made possible through the generous support of sponsors and the speakers who dedicated their time and expertise to enrich the event. Their contributions were vital in making the Summit an impactful and life-altering experience for all attendees.
