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Newsletter Archive

9/26/2019 – Check out our latest newsletters and CDCN updates here! Sign-up for our newsletter by filling out your information at the bottom of any webpage.

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Chasing My Cure

9/10/2019 – Co-Founder & Executive Director, David Fajgenbaum, releases a memoir about his life-threatening battle with Castleman disease and the CDCN’s story—now available wherever books are sold!

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David Fajgenbaum

CDCN Co-Founder on GMA

8/26/2019 – Dr. David Fajgenbaum, co-Founder & Executive Director of the Castleman Disease Collaborative Network (CDCN), a physician-scientist at the University of Pennsylvania, and a patient battling the same disease that he studies, were profiled today on Good Morning America as part of a segment about Fajgenbaum’s new book, Chasing My Cure: A Doctor’s Race to Turn Hope Into Action

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July 23 is World Castleman Disease Day

7/19/2019 – The Philadelphia City Council unanimously passed a resolution declaring July 23 as World Castleman Disease Day in the City of Philadelphia! This resolution not only recognizes the CDCN’s celebration of the 2nd annual World Castleman Disease Day, but also shows the council’s support in the the continued efforts of the CDCN to accelerate research to find a cure for Castleman Disease and improve the lives of all Castleman patients and their loved ones.

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CZI partners with CDCN

6/11/2019 – The Castleman Disease Collaborative Network (CDCN) is excited to announce that we are partnering with the Chan Zuckerberg Initiative (CZI) to accelerate Castleman disease research and further build a prototype that revolutionizes all rare disease research.

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Press Release: CDCN Partners with CZI

6/11/2019 PHILADELPHIA (June 2019) — The Castleman Disease Collaborative Network (CDCN) is proud to announce a new partnership with the Chan Zuckerberg Initiative (CZI) to strengthen and scale the CDCN’s collaborative network approach to advance cures for CDCN and other rare diseases. CDCN’s model inspired CZI’s Rare As One Project, committed to uniting rare disease communities in their quest for cures.

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Minji Byun

First CD Genome Project Data Publicly Available

5/3/2019 – Thanks to a study funded by the CDCN’s Castleman Disease Warriors, the Wharton Class of 2015, and the Penn Orphan Disease Center, the first whole genome sequencing of Castleman patients was carried out by Dr. Minji Byun! Dr. Minji Byun, an Assistant Professor of Medicine at the Icahn School of Medicine at Mount Sinai, conducted a research study which had the goal of seeing if a possible cause of CD could be a genetic defect.

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CDCN Publishes on the Collaborative Network Approach

4/18/2019 – CDCN leaders David Fajgenbaum (Co-Founder), Mary Zuccato (COO), and Dustin Shilling (Senior Scientific Advisor) published “The Collaborative Network Approach: A model for advancing patient-centric research for Castleman disease and other rare diseases” in a 2019 review article in the journal Emerging Topics in Life Sciences. This paper outlines the CDCN’s novel strategy to accelerate research and reach the goal of finding an effective treatment for all Castleman disease patients.

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2018 CDCN Highlights

12/21/2018 – 2018 has been an amazing year for the CDCN! In honor of all the progress that we have recently made thanks to support of hundreds of patients, loved ones, and community members from around the world, we are highlighting some of our biggest accomplishments of 2018.

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Fourth Annual Quest for a Cure

12/18/2018 – The Fourth Annual Quest for a Cure Gala was an incredible success! Quest for a Cure was held on November 16, 2018 at the beautiful Arts Ballroom in Philadelphia, PA. Our CDCN community of patients, loved ones, and supporters came together for a beautiful evening filled with cocktails, hoeur d’oeuvres, a seated dinner, and a silent auction.

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CDCN at the 2018 ASH Conference

12/7/2018 – The Castleman Disease Collaborative Network had its best showing yet at the American Society of Hematology’s Annual Meeting and Exposition, the premier event of the global hematology community! This year, ASH’s annual meeting brought together over 27,000 researchers, physicians, and educators from all over the world, including many of the world’s foremost experts in Castleman disease.

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5th Annual Patient & Loved One Summit

10/8/2018 – The 2018 Patient and Loved One Summit was a hit! The fifth annual summit took place on September 21-22, 2018 at the University of Pennsylvania and brought together over 90 patients, loved ones, and CDCN volunteers and staff from around the world.

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New French Reference Center for Castleman disease holds Launch Meeting

8/13/2018 – A new French reference center for Castleman disease held a launch meeting in Paris, “Premiere Journee du Centre de Référence ‘Maladie de Castleman!” The meeting was led by the Director of the new Center, Dr. Eric Oksenhendler. Dr. Oksenhendler has spent over 20 years pushing the Castleman disease field forward, including a large case series from as far back as 1996 that highlighted the significant morbidity and mortality associated with multicentric Castleman disease at the time.

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Patient-Funded Research Reveals Critical New Info about CD

6/20/2018 – We are proud to announce the publication of our SPEED I (Serum Proteomics Evaluation for Etiology and Pathogenesis Data I) research study in the American Journal of Hematology in April 2018 titled Plasma proteomics identifies a ‘‘chemokine storm’’ in idiopathic multicentric Castleman disease. The study found that iMCD is not simply a disorder of IL-6; it’s a complex inflammatory disorder that the global medical community is just beginning to unravel.

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CDCN Funds Four High-Impact Grants

3/28/2018 – The CDCN is excited to announce funding for four high-impact research proposals! Each research project was awarded an individual grant of $42,000. The grants were awarded to Dr. Minji Byun at the Icahn School of Medicine, Dr. Robert Ohgami at Stanford University, Dr. Pillai at the Children’s Hospital of Philadelphia, and Dr. Wenbin Xiao at Memorial Sloan Kettering Cancer Center.

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Dr. Fajgenbaum on the Today Show

1/30/2018 – The TODAY aired a special on Dr. Fajgenbaum and his remarkable story called “Doctor with rare disease racing to save his own life.” The segment highlighted the challenges faced by rare disease and Castleman disease patients, as the medical community often has poorer understandings of how rare diseases work. Watch the story here!

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Forbes Healthcare Summit 2017

12/1/2017 – Co-Founder and Executive Director of the CDCN, Dr. Fajgenbaum, traveled to New York City to share his story at the Forbes Healthcare Summit. Watch his spotlight entitled “Treating My Own Cancer” here!

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First-Ever Diagnostic Criteria and ICD-10 Code for Castleman Disease!

2/28/2017 – Big strides were made recently for the diagnosis of Castleman disease patients! The first-ever diagnostic criteria for HHV-8-negative “idiopathic” Multicentric Castleman disease has been published in the top hematology journal, Blood. Though Castleman disease was first described in 1954, this is the first time there has ever been a diagnostic criteria for it.

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Patient-Driven Research Questions Answered

6/30/2016 – Dr. David Fajgenbaum answered the top questions asked by patients and provided an update on how our research is answering your questions in the CDCN’s first webinar on August 29th, 2016. Watch the webinar here!

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The CDCN Has Been Busy!

6/26/2016 – The CDCN has made a lot of progress on its mission! Multiple promising studies into Castleman disease are under way, fundraising and patient outreach events have been a huge success with more on the way, and numerous papers have been published in high-impact journals.

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CDCN Making National Headlines

12/1/2015 – The CDCN and its high-impact research programs have been profiled in several news media outlets recently including ABC-11, Fox 29, and the Philadelphia Inquirer, and was featured at the Medidata Congress!

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CDCN Hosts International CD Pathology Preceptorship with Experts from Latin America

3/6/2015 – On February 27-28, 2015, the CDCN co-hosted the first-ever International Castleman Disease Pathology Preceptorship at the University of Pennsylvania. The Preceptorship included the eight top hematopathologists from across Latin America and the faculty included Drs. David Fajgenbaum, Dale Frank, and Adam Bagg from from the University of Pennsylvania as well as Dr. Ahmet Dogan from Memorial Sloan Kettering Cancer Center.

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Co-Founder & Executive Director Named to Forbes 30 Under 30

1/7/2015 – Dr. David Fajgenbaum, co-Founder & Executive Director of the CDCN and Adjunct Assistant Professor of Medicine in the division of Hematology/Oncology at the University of Pennsylvania, was named to Forbes Magazine’s 30 Under 30 list in healthcare! Dr. Fajgenbaum is a physician-researcher-entrepreneur that has repeatedly used personal adversity as motivation to create groundbreaking initiatives that overcome serious problems.

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CDCN Presents at HEMO in Brazil

11/21/2014 – CDCN co-founders, Drs. David Fajgenbaum and Frits van Rhee, presented their new model of pathogenesis and classification system at HEMO, the Brazilian Congress on Hematology and Hematotherapy, in Florianopolis, Brazil. HEMO is the fourth largest hematology conference in the world.

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CDCN Researchers Publish Article on MCD Classification

5/8/2014 – Researchers with the CDCN develop a new disease classification system and propose a model of pathogenesis for the potential causes of idiopathic MCD, and provide a new clarity of insight that will expedite further research into the diagnosis and treatment of Castleman disease.

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Board President Greg Pacheco’s Fight Against Castleman Disease

7/14/2014 – CDCN Board president, Greg Pacheco, shares his story about his battle with Castleman disease. He and his wife, Charlyn Pacheco, established the nonprofit organization called CARE (Castleman’s Awareness and Research Effort) in 2007 and raised enough money to fund the Greg Pacheco Castleman Research Laboratory at UAMS. In 2012, Greg partnered with Dr. David Fajgenbaum to establish the Castleman Disease Collaborative Network.

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FDA Approves Sylvant for Castleman Disease

6/10/2014 – The U.S. Food and Drug Administration today approved Sylvant (siltuximab) to treat patients with multicentric Castleman disease (MCD), a rare disorder similar to lymphoma (cancer of the lymph nodes).

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