The 6th Annual Patient and Loved One Summit will be held at the University of Pennsylvania on August 23-24, 2019! The Summit provides patients and loved ones with the opportunity to learn about Castleman disease from world experts, hear about the latest CD research, and--most importantly--connect with other patients and loved ones affected by CD from around the world. August 23 will include several educational sessions amongst other activities, and August 24 will include a social event in Philadelphia. Need-Based Travel grants are available for both national and international patients and loved ones and, thanks to our generous sponsors, we will be able to provide more travel grants this year than ever before! Our sponsors this year include EUSA Pharma, the Chan Zuckerberg Initiative, and the Castleman Disease Collaborative Network

Nominate deserving patients, loved ones, physicians, researchers, and community members for the 2019 Warrior Awards here


About the Summit

Summit Dates: Friday, August 23-Saturday, August 24, 2019. 

Educational sessions take place from ~8 AM-5 PM August 23, and the social Community activity take place from ~9AM-3 PM on August 24. 

Location: Educational events on August 23 will take place on the University of Pennsylvania campus in Philadelphia, Pennsylvania. The social Community activity on August 24, 2019 will take place in Philadelphia. 

Costs: There is no registration fee for Castleman disease patients or their loved ones. Costs associated with the Summit include travel, lodging, and food expenses. Breakfast and lunch are provided on August 23, and lunch is provided on August 24. Transportation between the hotel and the Community activity on August 24 will be provided.

Registration: Registrations are accepted on a rolling basis and spots are available on a first-come, first-serve basis. As an incentive for early registration, the first 50 people to register will receive a free, signed copy of Dr. David Fajgenbaum's memoir, Chasing my Cure, two and a half weeks before it is on sale!

The CDCN works very hard to put on the Summit free-of-charge for patients and loved ones affected by Castleman disease. For planning purposes, we ask that you please register as early as possible so that we can provide the best possible experience for all attendees. The final deadline to register is Sunday, August 18, 2019; however, deadlines for travel grants and hotel accommodations occur earlier.

Register for the Summit by completing the form here! You can also express your interest in attending using the same form here.

Travel Details: Events on Friday, August 23 will take place in the Perelman Center for Advanced Medicine at the University of Pennsylvania, 3400 Civic Center Blvd Philadelphia, PA 19104

The closest airport to the University of Pennsylvania is Philadelphia International Airport (PHL).

Accomodations: The CDCN has arranged a room block with a group-rate at the Sheraton Philadelphia University City Hotel, located at 3549 Chestnut St, Philadelphia, PA 19104. The group rate is $155/per room/per night. The group rate is available for three nights, Thursday, August 22-Saturday, August 24. The deadline to book with the group rate is Monday, July 15, 2019, 11:59 PM EST. 

To book rooms in the hotel block, please reserve your rooms using the link here by Monday, July 15, 2019, 11:59 PM EST! Please see the instructions below before reserving a room.

Instructions for the Hotel Room Block

- Click the link here to bring you to the reservation page. 

-Under the picture of the hotel, there is a drop-down menu called "Dates." Please carefully select the dates that you would like to reserve your room for. The Summit starts in the morning on August 23 and ends around 3 PM on August 24. 

- Click "Check Availability"

- The default setting is for 1 Room and 1 Adult. To make changes to the number of desired rooms or to add additional adults or children, click "EDIT" on the right side of the screen. A maximum of four people can stay in each room. All rooms are Double rooms with two queen sized beds.

- Once you have confirmed the correct dates and correct number of rooms & guests, click "select." The cost is $155 per night

- Follow the remaining web pages to reserve your rooms. You will receive a confirmation email after you have made your reservations.

- Please email if you have any difficulities with reserving a room. The deadline to reserve rooms in the room block is Monday, July 15, 2019 at 11:59 PM EST. 

Need-Based Travel Grants

Application Due: Tuesday, June 18, 2019, 11:59 PM EST

The CDCN works to ensure that cost is not a barrier for patients to attend the Patient and Loved One Summit. Because of this, we have been able to set aside funds to assist with the costs of travel and lodging. The CDCN will only be able to award travel grants to patients and loved ones with the greatest financial need and greatest desire to expand their knowledge about Castleman disease. We have a limited number of grants to award; therefore, grants will preferentially be awarded to patients (rather than loved ones).

We kindly ask that only individuals who would not be able to attend the Summit without a need-based travel grant apply for one so that the maximum number of patients and loved ones can benefit from the Summit experience.

More Information:
- Each patient may receive up to two grants, one for themselves and one for a Loved One/family member/friend.
- Each individual grant will be issued for up to $750 per individual traveling within the US and up to $1250 per individual traveling internationally.
- Patients and loved ones are responsible for paying for flight and hotel costs individually upfront and then can submit receipts to the CDCN for reimbursement up to the total amount of the grant. Reimbursement checks will be issued at the event.

- Patients and Loved Ones must be part of our online CDCN community. If you have not already joined, please join here before completing this application.
- Only hotel receipts from the Sheraton Philadelphia University City Hotel will be reimbursed. The nightly rate is $155/per night/per room. The group rate is available for up to three nights, Thursday August 22-Saturday, August 24.
- Hotel rooms in the group block must be reserved by Monday, July 14 in order to receive reimbursement
- Flights must be booked by Wednesday, July 31 in order to receive reimbursement for flight costs.

Need-Based travel grant applications are due on Tuesday, June 18, 2019. Preference will be given to first time Summit attendees.
Applicants will be notified of if they receive a travel grant by Monday, June 24, 2019.

Apply for a need-based travel grant by filling out the application here! 

Important Registration Dates

Need-Based Travel Grant Application deadline: Tuesday, June 18, 11:59 PM EST

Group-Rate Hotel Deadline: Monday, July 15, 11:59 PM EST

- Final Registration Deadline: Sunday, August 18, 11:59 PM EST

- Hotel Booking deadline for Travel Grant recipients: Monday, July 15, 11:59 PM EST

- Flight booking deadline for Travel Grant recipients: Thursday, July 25, 11:59 PM EST

Registration and Travel Grant Application Links

- Click here to register for or express your interest in the 2019 Patient Summit!

- Click here to apply for a need-based travel grant to attend the 2019 Patient Summit.


If you have any questions, please email: Sophia Parente, Chief of Staff,  


The Fifth Annual Patient & Loved One Summit was held at the Hospital of the University of Pennsylvania in Philadelphia, PA on Friday and Saturday, September 21-22, 2018.  Check out our story about it here!