The NephCure Patient Summit

Join us in Orlando (or virtually!) to learn, engage, and connect at one of the world’s largest gatherings of rare kidney disease patients, caregivers, health care professionals, researchers, and partners.

We are pleased to offer the 2022 summit experience both in-person and online. With two days of educational sessions and engaging speakers, you will gain insights about the latest in rare kidney disease research, diet and nutrition information, mental health resources, clinical trial opportunities and more. You will also have plenty of time to meet and connect with other patients and families and make memories in the Florida sun!

New this year, we will have a parallel NephCure Youth Summit, with dedicated programming just for kids!

The Summit always sells out, so we recommend registering early.

Note: The in-person Patient Summit and Youth Summit are SOLD OUT. Virtual Summit tickets are still available.

Speakers and Topics

The world's leading experts on protein-spilling kidney diseases are joining us to cover topics including:

  • Progress in rare kidney disease research and updates on new potential treatments
  • Disease education and information for newly diagnosed patients
  • Mental health support and how to cope with a chronic illness
  • Updates in kidney transplantation and advice you need to hear
  • Genetics, diagnosis, and predicting your rare kidney disease journey
  • Rare kidney diseases in communities of color
  • Diet and nutrition guidance and a live cooking demonstration
  • COVID-19 and kidney disease – considerations for patients
  • Sharing your story to make an impact on research
  • And more! 

Registration Fees

  • Virtual Summit: $10 per device
  • In-person Patient Summit with Swan and Dolphin hotel room (up to 4 people — includes 3 nights): SOLD OUT
  • Additional in-person Patient Summit registrant: SOLD OUT
  • Youth Summit: SOLD OUT

Summit registration fees will not be refunded after March 1, 2022. Prior to this date, fees can be refunded minus an $80 service charge per in-person registration and $5 service charge per virtual registration. 

Please ensure you've read and understand our COVID-19 guidelines before registering. Note: those who attend the Summit in-person will be required to show proof of full vaccination or a negative PCR COVID-19 test completed within 3 days of April 28.

Youth Summit


Note: The Youth Summit is SOLD OUT. We are thrilled to offer our first NephCure Youth Summit in 2022! We have space for a limited number of youth participants, ages 8 to 17, whose parents have also registered for the NephCure Patient Summit. Because kidney disease affects the entire family, siblings are welcome to register as well.


The Youth Summit will happen simultaneously to the Patient Summit. Attendees will be split into small groups based on age and led by qualified volunteers and NephCure Staff. They will enjoy most meals with the adult Patient Summit and split off into their own meeting space for the remainder of their time together.


Youth Summit attendees will spend the first part of each day learning as they participate in educational sessions, team-building exercises, guided activities, and games, both as a large group and in small groups. Topics will include learning more about their disease, guided art therapy, group therapy sessions, and more.


After lunch on Friday, attendees and their leaders will enjoy time to connect through an off-site adventure at one of the Disney parks. 


The Youth Summit is in-person only and expected to sell out quickly! Those whose parent(s) have registered for the NephCure Patient Summit are eligible to register for the Youth Summit. We are not able to accommodate all special needs. Please review our FAQ section and contact us with questions prior to registering.

COVID-19 Requirements


We recognize that many of our patient families are uniquely impacted by COVID-19. Our priority is to ensure the Summit is as safe as possible for all attendees. We respect everyone’s views and circumstances and are pleased to be offering both virtual and in-person options to attendees.


Those who attend the Summit in-person will be required to show proof of full vaccination or a negative PCR COVID-19 test completed within 3 days of April 28.

Resort Accommodations


The Summit will be held at the Walt Disney World Swan and Dolphin Resort, located near Disney World. The property is fully air-conditioned and has an outdoor pool, fitness center and business center. Wheelchair accessible rooms are available upon request. All rooms include complimentary wireless internet access. 

NephCure will cover the hotel expenses for 1 room for up to 3 nights (Thursday, Friday and Saturday) per family of 4. All rooms have 2 double beds and accommodate up to 4 guests. Our guests will have the option to reserve their room at our group rate and resort fee for up to 3 days before and 3 days after the Summit, depending on availability. 


NephCure will handle booking your accommodations once your registration is complete. Guests will be required to provide a credit card for incidentals upon checking into the resort. 



NephCure will provide a welcome dessert reception on Thursday evening, breakfast, lunch, and a snack on Friday, and breakfast and lunch 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 renal diets in a large group setting. For the Youth Summit, parents will be required to ensure their children comply with their individual dietary needs.

For meals not provided by NephCure, the resort has 17 restaurants and lounges to choose from, including poolside dining. There are also many affordable food options within a short walking distance or water taxi ride at Disney’s BoardWalk, or free shuttle ride to Disney Springs. 

Community Building Free Time & Local Attractions


We're planning a busy weekend of learning. We ask that you attend all sessions and save activities for the afternoon/evening, which we have reserved for attendees to connect with others while enjoying the many activities Disney has to offer!


Summit guests will have access to special discounted rates to Disney theme parks. You will receive more information upon registering.


The Walt Disney World Swan and Dolphin Resort also has many activities and special offers that you as resort guests can take advantage of. 



If you have any other questions, please contact Kelly Helm at

2022 Corporate Partners

Presenting Partner

Pfizer + GFB
Vertex + Talaris
Chinook + Otsuka
Natera + BI
Vera + Horizon-1
Novartis + ANI

Patient Scholarships provided by

Saving Kidneys, Saving Lives.