Patient and Loved One Summit

In light of the global Coronavirus crisis and our commitment to keeping our patients safe, the Castleman Disease Collaborative Network (CDCN) will be hosting its 7th annual Patient and Loved One Summit in a virtual (online) format.

Our annual Patient & Loved One Summit brings the Castleman disease community together for a weekend of education, insight, and friendship.

The Castleman Disease Collaborative Network (CDCN) invites you to the 7th annual Patient and Loved One Summit! Our Summit joins together over 100 patients, loved ones, and community members for a weekend of education, insight, research updates, and friendship! The
CDCN’s co-founder, Dr. David Fajgenbaum, physician-scientist at the University of Pennsylvania and author of Chasing My Cure: A Doctor’s Race to Turn Hope Into Action, and other key members of the CDCN team will host this event. Join us for an amazing weekend!


Event Details 

  • Location: Virtual
  • Dates: Thursday August 20th, Friday August 21st, and Saturday August 22nd
  • Time: 10am EST to 1pm EST each day
  • Registration is now open!
  • The Agenda for this years 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.

The agenda from the 2019 Patient & Loved One Summit can be found here.

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

Patient of the year

Frank Guarino- 2019 recipient

Raj Jayanthan- 2018 recipient

Ryan Hoke- 2017 recipient

Gary Gravina- 2016 recipient

Kim Driscoll- 2015 recipient

Jim Johnson- 2014 recipient

Loved one of the year

The Incorvia Family- 2019 recipient

Patty Prazenica- 2018 recipient

BJ Campbell- 2017 recipient

Mileva Repasky- 2016 recipient

Community member of the year

EUSA Pharma- 2019 recipient

Mary Zuccato- 2017 recipient

Mary Guilfoyle- 2016 recipient

Researcher of the year

Dr. Chris Nabel- 2018 recipient

Dr. Ian Lipkin- 2018 recipient

Dr. Kojo Elenitoba- 2017 recipient

Dr. Megan Lim- 2017 recipient

Dr. Alexander Fossa- 2016 recipient

Physician of the year

Dr. Eric Oksenhendler- 2018 recipient

Dr. Thomas Uldrick- 2017 recipient

Dr. Frits Van Rhee- 2016 recipient

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