The diagnosis of Castleman disease can be scary and many people feel alone in this fight. All Castleman disease patients are faced with challenges and difficult decisions that can make dealing with a rare disease even more difficult. Here you will find ways to gain support and connect with other people who are battling this disease.
CDCN Connect
Navigating a Castleman Disease diagnosis can feel overwhelming, especially with so many unknowns about this rare disease. But you are not alone. Connecting with others who understand your journey can provide invaluable support, guidance, and strength.
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
The CDCN team checks in daily to provide updates, answer questions, and ensure this space remains a valuable resource for all members.
If you’re interested in joining, reach out to Madison at madison@castlemannetwork.org for an invite. We’d love to welcome you into the community! 💙
Social Media Pages
Connect with other Patients and loved ones through social media.
Facebook:
CDCN Facebook Page
International Castleman Disease Organization
Castleman Disease Support Group
Twitter: @CureCastleman, #castleman
Instagram: @CureCastleman, #castleman
The Carenity community
Carenity is an online community that connects patients with chronic conditions (including rare diseases) and their loved ones.
The CDCN is currently working with Carenity to create and unite a European community around Castleman disease. Together, we are building the first patient-centered network in Europe which connects people affected by Castleman disease.
The aim of this community is to provide patients and their families with support in difficult times, a way to share their experiences and hopes, as well as access to articles and testimonials related to Castleman disease.
Join Carenity!
Carenity is available worldwide with dedicated platforms in France, USA, United-Kingdom, Spain, Italy and Germany.