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Cumbre de pacientes
The Westin New York at Times Square
270 West 43rd Street
New York, NY 10036N
April 3-5th
Registration will remain open until March 12, 2025, assuming there is availability.
Venga y sea parte de una ocasión enriquecedora y empoderadora en la Cumbre anual de pacientes y la Cumbre juvenil de NephCure. Esta reunión está diseñada para personas, familias, cuidadores, defensores y aliados de la atención médica afectados por enfermedades renales raras que derraman proteínas.
Our aim is to offer education, solidarity, and optimism to those navigating the challenges of rare kidney disease (RKD). Join us in forging connections, acquiring knowledge, and being inspired. Together, let’s create lasting memories and foster hope in this historical setting.
En este evento, escuchará a los principales expertos, investigadores e individuos que han dedicado sus carreras o se ven afectados personalmente por RKD, aprenderá de los especialistas de NephCure que están a la vanguardia de la innovación de RKD y trabajan para mejorar las vidas de los pacientes de RKD, obtendrá información valiosa. información sobre cómo gestionar los desafíos de vivir con RKD, como la dieta y la nutrición, la salud mental y más. También se conectará con otras personas que comprenden su viaje y construirán un sistema de apoyo, aprenderán cómo ser un firme defensor de sí mismos y de la comunidad RKD. La cumbre juvenil ofrece un espacio seguro para que los jóvenes guerreros del riñón y sus hermanos se conecten, aprendan y divertirse.
Corporate Partnership: Industry attendance at NephCure in-person events is available exclusively through sponsorship. If you are interested in sponsoring the 2025 Patient Summit, please email Britta Dornan, Executive Director of Strategic Relations, at bdornan@nephcure.org.
EVENT DETAILS
EVENT HIGHLIGHTS
Engage with inspiring speakers, learn from disease experts, and gain practical tools in interactive workshops covering nutrition, mental health, and more. Build connections, explore advocacy opportunities, and empower the next generation of kidney warriors through the Youth Summit. Join a community dedicated to supporting those affected by Rare Kidney Diseases.
Youth Empowerment:
The Youth Summit offers a safe space for young kidney warriors and their siblings to connect, learn, and have fun.
Inspiring Speakers:
Hear from leading experts, researchers, and individuals who have dedicated their careers or are personally affected by RKD.
Disease Education:
Learn from NephCure specialists who are at the forefront of RKD innovation and working to improve the lives of RKD patients.
Interactive Workshops:
Gain valuable insights into managing the challenges of living with RKD such as diet and nutrition, mental health, and more.
Community Networking:
Connect with others who understand your journey and build a support system.
Advocacy Opportunities:
Learn how to be a strong advocate for yourself and the RKD community.
Patient Summit Registration
This includes admission for one (1) adult to the NephCure Patient Summit.
This registration applies to all patients, patient family members, care partners, speakers, health care professionals, researchers and NephCure staff.
Your registration fee includes:
- Access to all NephCure Patient Summit sessions taking place on-site at The Westin New York at Times Square
- Food and beverages provided on:
- Thursday evening dessert reception
- Friday breakfast, lunch, afternoon snack
- Saturday breakfast and lunch
You will also receive a gift bag including a journal, pen, and other NephCure swag!
REGister now
Patient Summit Agenda
The 2025 Patient Summit agenda is shaping up to be a can’t-miss event, with dynamic sessions focused on empowering patients and caregivers.
Highlights include expert insights, interactive workshops, and networking opportunities with the kidney disease community. Get the full details and plan your experience.
View Now
Scholarships
NephCure’s Scholarship Program empowers rare kidney disease (RKD) patients to attend the Patient Summit by providing financial support for travel and accommodation. Thanks to NephCure’s generous partnerships, this program ensures that patients can connect, learn, and advocate without the burden of additional costs, fostering a more inclusive and supportive community.
Resumen de la Cumbre de Pacientes 2024
¡Gracias a todos los que nos acompañaron en la Cumbre de Pacientes de 2024!
Estamos orgullosos de anunciar que tuvimos 255 asistentes a la Cumbre de Pacientes de este año, ¡y 139 de estas personas asistieron por primera vez!
¡Estamos muy agradecidos por todos los que se unieron a nosotros en la Cumbre de Pacientes NephCure 2024! Su presencia, historias y apoyo hicieron que este evento fuera realmente especial. Juntos, somos más fuertes en la lucha contra la enfermedad renal. ¡Gracias por ser parte de nuestra comunidad!
Visita nuestra página de YoutubePreguntas frecuentes
Cumbre de pacientes
Anyone who is impacted by a primary, rare, protein-spilling kidney disease is encouraged to attend the NephCure Patient Summit. Each year we welcome both patients (and their care partners) with all types of rare kidney diseases (RKD), including nephrotic syndrome, FSGS, IgA nephropathy, C3G, minimal change disease, and more.
Youth Summit
Patients and their siblings, ages 8 to 18, whose parent(s) are attending the Patient Summit, are eligible to attend the Youth Summit. We feel it’s important to include siblings because they are also impacted by their sibling’s condition and miss out on enough!
The Youth Summit is open to patients and their siblings between the ages of 8 and 18 years old. There will not be childcare provided for children under the age of 8 or those not registered for the Youth Summit.
Note: Attendees will be visiting a local attraction off-site, as one of their activities. We do not recommend registering patients who are not able to participate fully. We are also unable to support children with high medical/special needs, safely. If you have a concern, please contact patientsummit@nephcure.org prior to registering.
Cumbre de pacientes
The NephCure Patient Summit brings together a diverse and supportive community of patients, caregivers, healthcare professionals, and advocates who understand your journey, offering a network of educational and emotional support. The summit provides an invaluable opportunity to learn from leading experts in RKD, which can empower you to make informed decisions about your or your loved one’s condition.
Through informative workshops, seminars, and panel discussions, you’ll acquire practical tools and strategies for managing your or your loved one’s disease and stay up-to-date with the latest developments in newly approved treatments, research, and clinical trials in the RKD space.
Beyond the education and support you will receive, the summit includes social activities and a chance to simply enjoy your time with other members of the RKD community. Attending the summit is often a life-changing experience that equips you with knowledge, support, and a sense of purpose in the fight against RKD.
Youth Summit
We know that living with a rare kidney disease has many challenges and the feelings of isolation and being different rank among the top. We also know that siblings are impacted by RKD in the home and their sacrifices and struggles are often not addressed. The Youth Summit is a place where both patients and siblings make connections with other children who are on similar paths and have common understanding of the challenges each other face.
At this year’s Youth Summit, your child(ren) will connect with peers who truly understand the journey of living with rare kidney disease (RKD). Through engaging sessions, fun team-building activities, and exciting off-site adventures, they’ll learn how to talk confidently about RKD and understand how it affects their bodies. Most importantly, they’ll leave with a sense of belonging, empowered by a supportive community that gets it.
Cumbre de pacientes
Yes! NephCure has been extremely thoughtful to provide adequate time and a conducive environment to promote peer to peer connections. Much of this “patient connection” time is built into the agenda. Also, once registered, attendees will receive information on additional activities that will allow even more connection opportunities.
Youth Summit
The Youth Summit staff carefully construct an agenda that ensures each child, both patient and siblings have the opportunity to connect with others who are similar age and who have been on similar journeys with kidney disease. We start with purposeful team building activities on Thursday evening to help attendees feel supported and accepted. During the remainder of the Youth Summit, we plan an agenda of learning, connection time, and just fun to balance difficult topics and growth opportunities, with fun activities that will make wonderful memories!
Cumbre de pacientes
The NephCure Patient Summit is held in the hotel which tends to be chilly with air conditioning. We recommend casual, comfortable clothing and bring layers!
Youth Summit
The Youth Summit will be held both inside the hotel conference area and outside for various activities. We suggest packing comfortable clothing and layers to keep warm in the air-conditioned conference center and early spring in New York City.
Cumbre de pacientes
Hotel Questions?
Visita nuestro Hotel Page to learn more about NephCure booking patient family hotel rooms and more.
Meals
NephCure will provide a welcome dessert reception on Thursday evening; breakfast, lunch, and a snack on Friday; and breakfast and lunch on Saturday. All meals will have low-sodium, gluten-free, vegetarian, and vegan options. Ingredient lists are available for each meal by asking the waitstaff. Unfortunately, we are not able to accommodate specific renal diets in a large group setting.
Health and Safety
Masks are not required but are welcome, especially out of consideration for high-risk individuals in attendance.
Youth Summit
What’s included in my Youth Summit registration fee?
Registration fee gives attendees access to all NephCure Youth Summit sessions taking place on site at The Westin New York at Times Square and off-site activities to be determined.
Food and beverages will be provided for:
- Thursday evening dessert reception
- Friday breakfast, lunch and afternoon snack
- Saturday breakfast and lunch
Youth Summit attendees will receive a gift bag of goodies, including a Youth Summit t-shirt. They’ll also receive tickets/admission to the off-site activities!
How are my children kept safe during the Youth Summit?
The Youth Summit is run by qualified staff and trained volunteers. All adults working at the Youth Summit have passed background checks and participate in extensive training on our policies and procedures designed to keep the youth attendees safe and ensure they enjoy their time with us. If you would like more information on our safety policies feel free to reach out.
Note: For the children’s best interest, we are not able to accommodate all special needs. Please contact patientsummit@nephcure.org with questions prior to registering.
Is childcare offered for children younger than 8 years old?
The Youth Summit is open to patients and their siblings between the ages of 8 and 18 years old. There will not be childcare provided for children under the age of 8 or those not registered for the Youth Summit.
Patrocinadores
Voluntario
Descubra el poder del voluntariado con NephCure a través de nuestro Volunteer Hub, su destino final para todo lo relacionado con el voluntariado. Ya sea que su pasión sea la recaudación de fondos, la defensa, el apoyo al paciente, la planificación de eventos o la divulgación, hay un puesto significativo esperándolo. Consulte nuestras oportunidades de voluntariado y sea parte de marcar la diferencia.
Defensor
NephCure se compromete a abogar por políticas que mejoren las vidas de los pacientes con enfermedades renales raras y sus familias. Obtenga más información sobre nuestros esfuerzos de promoción y prioridades políticas, incluido nuestro apoyo al Proyecto de Ley New Era y otras iniciativas legislativas destinadas a promover la investigación y el acceso a la atención. Únase a NephCure Action Network y sea una voz para el cambio.
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