Connect with others in the iMCD community
For people living with or caring for someone with iMCD, the road to diagnosis can be long and exhausting. Having the support of others who have been through a similar journey and understand iMCD can make a big difference.
Tracking symptoms
If you or a loved one have been diagnosed with
iMCD, this diary can help you manage symptoms.
Advocacy groups
There are various websites and social media channels where you can connect with others who understand the challenges of living with or caring for someone with a rare disease like iMCD and begin to build a support system. We encourage you to explore the below groups to stay up to date on the latest developments in the fight against iMCD.
Castleman Disease Collaborative Network (CDCN) is a global initiative dedicated to accelerating research and treatment for Castleman disease.
National Organization for Rare Disorders (NORD) is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.
Global Genes was established to connect, empower, and inspire the rare disease community.
RareConnect is a place where rare disease patients can connect with others globally.
ACCELERATE Patient Registry
ACCELERATE is a registry created and maintained by the University of Pennsylvania that collects medical data about people suffering from Castleman disease. The information is then shared with researchers and doctors, with the goal of improving treatments and treatment plans.
Frequently Asked Questions (FAQs)
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