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.
The CDCN’s Patient & Loved One Discussion Board (CDCN Connect) is a private virtual community for connecting with one another and advancing a cure. CDCN Connect allows patients and loved ones to communicate, ask questions, provide support, and vote on upcoming research ideas. You must be a member of the CDCN patient and loved one community to join CDCN Connect.
Social Media Pages
Connect with other Patients and loved ones through social media.
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.
For patients and loved ones diagnosed with Castleman disease, the diagnostic journey and the battle against this disease can be overwhelming and leave you feeling alone in this fight. This journey is complicated by the lack of knowledge that exists with this disease. As you continue your battle with Castleman disease, consider connecting with other patients or loved ones who have been through this and can offer support and guidance as you begin to navigate through this rare disease. We hope to help patients and loved ones obtain the most up to date information on Castleman disease, and access to all available resources and support.
The CDCN Patient Ambassador can assist patients in:
- Answering questions about Castleman disease and diagnosis
- Sharing information on treatment guidelines
- Providing expert physician referrals
- Connecting patients with other Castleman disease patients and loved ones
- Offering support and guidance
- Being available to talk to someone who has shared a similar experience
Share your story
Many Castleman disease patients have found strength in sharing their story with others. If you are interested in sharing your story with the CDCN community, please fill out the form below. We are happy to include your story amongst other Castleman warriors on our webpage here.