The support you need to fight back against iMCD

decor-left-1 decor-right-1

Community Support

Connect with experts, patients, and caregivers

For people with idiopathic multicentric Castleman disease (iMCD), the road to diagnosis can be long and exhausting. Once you get an accurate diagnosis, your doctor will design a treatment plan that is tailored to you.

The following tools can help you get a better understanding of your symptoms, as well as keep track of them, so that you can have an in-depth discussion with your doctor. 

Question mark icon

Those who suspect iMCD as a possible diagnosis should use the Symptom Checker to start a discussion with their doctor.

pencil icon

If you have been diagnosed with iMCD, this Patient Diary can help you manage your iMCD.

Advocacy Groups

There are various websites and social media channels where doctors, patients, and caregivers discuss the challenges they face in their fight against rare diseases like iMCD. We encourage you to connect with others and 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 is dedicated to eliminating the burdens and challenges of rare diseases for patients and families by providing information, resources, and connections to communities affected by rare disease.

RareConnect is a place where rare disease patients can connect with others globally.

Facebook Groups

Facebook Groups are a great way to connect with other patients or caregivers. Each group has something unique to offer, whether you are looking for support, community, or education:

The content and discussions in the above-mentioned websites and Facebook groups reflect the views of the people managing or participating in them. KnowiMCD.com bears no responsibility for the accuracy of the website content or the comments made in the groups and will bear no responsibility or legal liability for discussion postings. Please respect the rights and feelings of the participants while interacting with others.

Icon text and heart

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.

If you are a patient with Castleman disease, you can sign up for the registry and become part of this initiative.