Other Resources

Here are some additional resources that may provide you with helpful information and support.

American Cancer Society

While Castleman’s Disease is not considered a form of cancer, some of the symptoms and treatments of the multicentric form of the disease are similar to those of cancer. This website offers programs and services that may be helpful to you.

National Organization for Rare Disorders (NORD)

NORD is an organization that advocates on behalf of those impacted by rare diseases. This organization offers easy-to-understand information on the symptoms, causes, and treatments of numerous rare diseases. In addition, information specialists are available to answer questions about patient resources, clinical trials, and more.

Global Genes® Project

The Global Genes® Project is a worldwide patient advocacy organization. Featured on the website is the RARE List™, which includes about 7000 rare diseases that affect more than 300 million people around the world. You can also find information about webinars, events, and ways to get involved, as well as patient stories.

Genetic Alliance

The Genetic Alliance’s network includes more than 1200 disease-specific advocacy organizations, as well as thousands of universities, private companies, government agencies, and public policy organizations. Along with links to disease-specific materials, an online tool is available to help users create customized family health histories.


EURORDIS is an alliance of 561 rare disease patient organizations in 51 countries. The EURORDIS InfoHub is a custom search engine that helps patients and their families find reliable rare-disease information on the Internet. Information is also available about rare-disease online communities.