Castleman Disease Virtual Support Groups

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.

As a member, you’ll have access to:

Discussion Groups tailored to your connection to Castleman Disease.

A Resource Library with the latest research, educational materials, and treatment information.

A Member Directory to find and connect with others in the community.

Private Chat Spaces for open and supportive conversations.

An Events Page to stay updated on upcoming meetings and webinars.

Direct Messaging for one-on-one connections.

The Warrior Flex Photo Wall to celebrate strength and resilience

Virtual Support Groups

Our virtual support groups are a place where you can come together with others affected by Castleman disease to share experiences, ask questions, find emotional support and build community. Once a month, the groups meet for an hour on Zoom.
What to Expect

Informal, supportive conversations
Open to patients and caregivers
No medical advice provided
Safe, respectful environment

Support Group Directory

This list contains our officially recognized support groups around the world. Click the Contact button if you want to email the group. Hover over the “Mission and more…” links for details of how the group supports its members.

Castleman Disease International Advocates Europe Mission and more... We are an informal, international network of committed Castleman Disease advocates who want to promote the networking of patients and loved ones, awareness and knowledge in their respective countries outside of the US. We believe that by building connections, we can learn from one another, support each other, and work together to improve the lives of people affected by Castleman Disease.	Castleman Disease China China	Asociación Española enfermedad de Castleman Spain
Castleman Disease Africa Foundation Africa Mission and more... The Castleman Disease Africa Foundation (CDAF) is a Uganda-based non-profit foundation founded in 2025 by Castleman disease survivor Henry Damulira. CDAF's vision is a future where people living with Castleman disease across Uganda and Africa have access to quality diagnosis, rehabilitation, treatment, and support services. Our mission is to reduce misdiagnosis and improve patient outcomes by promoting awareness, strengthening diagnostic capacity, supporting research, and providing patient-centered rehabilitation and psychosocial support services. CDAF is working toward establishing Africa's first Castleman Disease Patient Registry, increasing awareness among healthcare professionals and communities, supporting patients and caregivers, and fostering partnerships for research and innovation across the continent.	Italian Association of Castleman Patients OdV Italy	Morbus Castleman Austausch: für Betroffene und Angehörige Germany
Morbus Castleman Austria Austria