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

Important Registration Dates

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

About the Summit

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

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 Sheraton University City Hotel and Lucky Strike on August 24 will be provided.

Registration: Click here to register for the 2019 Patient & Loved One Summit!

Travel Details: Events on Friday, August 23 will take place in the Smilow Center for Translational Research in the Perelman Center for Advanced Medicine at the University of Pennsylvania, 3400 Civic Center Blvd Philadelphia, PA 19104. Bowling on August 24 will take place at Lucky Strike at 1336 Chestnut St, Philadelphia, PA 19107. A list of recommended restaurants, coffee shops, and other recommendations as well as directions from the Sheraton University City hotel to Smilow Center for Translational Research can be found here. Walking directions are also here.

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


A more detailed agenda can be found here.

Friday August 23rd

7:00-8:00am Registration and Breakfast

(7:30-10:30)am Ongoing Blood Draws for Sample Donation

8:00-8:15am Welcome Session

8:15-9:10am, What is Castleman Disease (Overview and Diagnosis)

9:10-9:30am CDCN Impact

9:30-9:45am Break

9:45-10:30am Small Group Discussion: Tell Your Story

10:30 am-12:00pm Treatments, Research Updates, and Symptom Management (2 sessions, Group 1: UCD and Group 2: MCD)

12:00-12:45pm Lunch

12:45-2:00pm Physician Q&A Panel

2:00-2:15pm Break

2:15-3:00pm Coping with Castleman Disease (2 sessions, Group 1: Patients and Group 2: Loved Ones)

3:00-4:00pm How to Fight Back

4:00-4:15pm Chan Zuckerberg Initiative Introduction, Rare as One Project

4:15-4:45pm Future of CDCN Discussion

4:45-5:15pm Warrior Awards and Closing Session

Saturday August 24th:

10:20am and 11:00am Buses will depart from the Sheraton University City Hotel 

11:00am-3:00pm Bowling at Lucky Strike

2:30pm Buses begin making return trips to the Sheraton University City Hotel

Walking Directions

Directions from the Sheraton (~12 min walk):Exit the hotel via the main entrance and walk left on Chestnut Street towards 34th street. Turn right onto 34th street. Continue on 34th street, passing the Hospital of the University of Pennsylvania on your right side. 34th street will become Civic Center Blvd. The Pereleman Center for Advanced Medicine (PCAM) will be on your left and the Children's Hospital of Philadelphia will be on your right. Cross the street to enter PCAM through the main entrance. 

There are 2 entrances. Entrance 1 is through the Perelman Center for Advanced Medicine 3400 Civic Center Boulevard. Take the escalator up to the 1st floor and make a right to the West Pavilion. Continue to enter onto the 1st floor of the Smilow Center for Translational Research. The entrance to the Arthur H. Rubenstein Auditorium is on the first floor. If you are unsure, ask the guard at the security desk. 

Entrance 2 is off of East Service Street (left by the Starbucks). From this entrance, take the escalator or stairs up to the 1st floor and enter the Arthur H. Rubenstein Auditorium.




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!