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.
Social Media Pages
Connect with other Patients and loved ones through social media.
Twitter: @CureCastleman, #castleman
Instagram: @CureCastleman, #castleman
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.