Newly Diagnosed

Supporting Castleman Disease Patients Every Step of the Way

The CDCN is here to guide, inform and empower you throughout your journey with Castleman disease.

A Message from CDCN Co-Founder David Fajgenbaum, MD, MBA, MSc

Dear Castleman Disease patients and loved ones,

I wish you didn’t have to join this community. I wish there wasn’t a need for an international network like the Castleman Disease Collaborative Network. But the reality is, Castleman disease continues to be a challenging mystery for the medical world.

I cannot imagine my life without this community. As someone who also battles Castleman disease, the CDCN has given me hope, strength and a family to lean on. Together, we’re making strides toward understanding this disease, improving treatments and working toward a cure. We’re here for you.

— David Fajgenbaum, Castleman Warrior, Co-Founder and President, CDCN

Where to Start

A diagnosis of Castleman disease can feel overwhelming. You likely have countless questions about your diagnosis and the journey ahead. We want you to know you’re not alone.

Castleman disease (CD) describes a group of rare inflammatory disorders that present with a broad range of symptoms similar to autoimmune diseases and cancers. There are several subtypes, each with distinct features and treatment approaches. Gaining a clear understanding of your specific subtype is crucial for effective management. Learn more about Castleman disease here.

Next Steps

Become a member of our Patient and Loved One Community

We have an incredible community of patients, loved ones, physicians and researchers fighting to cure Castleman disease. By joining this community, you will gain access to vital resources and opportunities to connect with others who truly understand your journey.

Join CDCN Connect

CDCN Connect is a private, online community created exclusively for patients and loved ones to share experiences, ask questions and support one another. This space is also a hub for staying informed and playing an active role in advancing research toward a cure.

If you are interested in joining, please reach out to Madison Ahearn, our Director of Programming and Operations, at madison@castlemannetwork.org, for an invitation to register. We’d love to welcome you into the community! 💙

Explore our resources for newly diagnosed patients

We have created a multitude of resources to help you navigate your journey with Castleman disease. From educational materials that explain this disease and the various options for treatment, to tools designed to help you manage your care and connect with others, you will find everything you need. These resources are here to empower you, answer your questions and provide trusted guidance as you take the next steps. 

Join the Fight for a Cure

You and your loved ones are a vital part of the effort to cure Castleman disease. Here are ways you can contribute:

• Donate Your Medical Data
  Join the ACCELERATE Registry, the first global patient registry for Castleman disease. By anonymously sharing your data, you’ll help researchers identify trends and evaluate treatments.

• Contribute Tissue Samples
  Donating blood or lymph node tissue is critical for advancing research and discovering new treatments. Your sample could help unlock a cure.
  

We’re Here For You

You are not alone in this journey. The CDCN is committed to providing the information, support and resources you need to navigate your diagnosis and treatment. If you have any questions or need assistance, please do not hesitate to contact us.

📧 Email: info@castlemannetwork.org
📞 Phone: 610.304.0696

Together, we’re building a future free of Castleman disease.