Patient and Loved One Summit

The 2024 Patient & Loved One Summit is July 25-27th!

Join the CDCN’s co-founder, Dr. David Fajgenbaum and other key members of the CDCN team in Philadelphia, PA at the Study for two days of education, fun, and friendship.

This event sponsored by Recordati will be held in person with a virtual component. Patients and loved ones from around the world are invited to attend to learn more about Castleman disease, connect with a supportive community, hear about the latest research from our experts, and get more involved in our collective fight against CD. 

Our agenda will include:

July 25, 6:00 pm to 9:00 pm ET: Warrior Reception – The Study at University City – 2nd Floor (Optional)

• • • • • 6:00-9:00 Warrior Welcome Reception at the The Study University City Hotel

July 26, 8:30 am to 4:00 pm ET: Summit – The Study at University City – 2nd Floor

• • • • • 8:30-10:00 Check-In and Breakfast 
          • 9:30-11:30 Ongoing Blood Draws for Sample Donation
        • 10:00-10:15 Welcome Session
        • 10:15-10:45 What is Castleman Disease: Overview & Diagnosis
        • 10:45-11:15 CD Research Updates 
        • 11:15-11:30 Break
        • 11:30-12:30 Treatments, Research Updates, and Symptom Management (4 sessions)
          • • Session 1: iMCD
            • Session 2: UCD
            • Session 3: HHV-8+ MCD
        • 12:30-1:15 Lunch
        • 1:15-2:30 Physician Q&A Panel
        • 2:30-3:45 Coping with Castleman Disease (3 sessions)
          • • Session 1: Patients
            • Session 2: Loved Ones
            • Session 3: Virtual Support Room
        • 3:45-4:00 Closing Remarks, Warrior Awards and Group Photo

July 27, 12:30 pm to 3:30 pm: Community Fun Day – Sunset Social at the Cira Green Rooftop (Optional)

• • • • • 12:00-4:00 Ongoing transportation between The Study and Sunset Social
        • 1:00-1:05 Welcome
        • 1:05-1:25 CDCN Impact
        • 1:25-1:40 How to fight back
        • 1:40-1:45 Closing Remarks

This year’s event will take place at the Study University City Hotel, located at 20 S. 33rd Street in Philadelphia, PA, 19104. Our Saturday roup activity will be hosted at Sunset Social on the Cira Green Rooftop.

Please contact Madison Ahearn at madison@castlemannetwork.org with any questions you might have.

Castleman Warrior Award Recipients

The Castleman Disease Collaborative Network is pleased to give out Castleman Warrior Awards annually to a Castleman disease patient, loved one, community member, researcher, and physician that has made the greatest impact on the lives of people with Castleman disease.

The winners have all made an impact through either research, patient care, support, advocacy, awareness, or fundraising. They embody the values of the Castleman Disease Collaborative Network of “patient focus, innovation, collaboration, impact with urgency, diversity, and commitment to people.”

The Castleman Disease Collaborative Network (CDCN) held its 10th annual Patient and Loved One Summit on August 11th and 12th, 2023! We had the opportunity to recognize the amazing efforts of individual members of our community— Lisa Carleno-Patient of the Year, Stacey Gravina-Loved One of the Year, and Josh Brandstadter-Physician of the Year.

Patient & Loved One Summit session recordings are now available! If you couldn’t attend live, you can watch the 2023 recordings here:

The 9th Annual Patient and Loved One Summit was held virtually and over 200 patients and loved ones from around the world registered to attend to learn more about Castleman disease, find support, and hear the latest research updates.

2022 Session Recordings:

The 8th Annual Patient and Loved One Summit was held virtually and over 200 patients and loved ones from around the world registered to attend to learn more about Castleman disease, find support, and hear the latest research updates.

The agenda from the 2021 virtual summit can be found here.

2021 Session Recordings:

The 7th Annual Patient & Loved One Summit was held virtually on August 20-22nd. Over 200 patients and loved ones from around the world registered to attend to learn more about Castleman disease, find support, and hear the latest research updates.

The agenda from the 2020 virtual summit can be found  here.

The 6th Annual Patient & Loved One Summit was held on August 23-24 2019 in Philadelphia, PA! Over 100 patients and loved ones from around the world attended to learn more about Castleman disease, find support, and hear the latest research updates.