Disease Community Links
Multicentric Castleman’s Disease Support in the Community
Many people who are diagnosed with a serious disease find it helpful to connect with others who have the same condition. You can make contact with other people who have Multicentric Castleman’s Disease and learn more about the condition or rare diseases in general through the organizations listed below.
Castleman’s Awareness and Research Effort
http://www.cdcn.org/about-us/partnership-with-care
Castleman’s Awareness and Research Effort (CARE) supports and advocates for the ongoing effort to cure Castleman’s Disease through raising awareness for the disease and funds to go towards research at top medical facilities and organizations. CARE is also the legal entity that supports the Castleman Disease Collaborative Network (CDCN). For more information, please visit http://www.cdcn.org/about-us/partnership-with-care
Castleman Disease Collaborative Network
The Castleman Disease Collaborative Network’s (CDCN) mission is to accelerate CD research, treatment, and patient care through global collaboration, strategic investments in research, and supportive resources for patients and their loved ones. For more information visit http://www.cdcn.org
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RareConnect Castleman’s Disease Community
RareConnect is a joint project of European Organization for Rare Diseases (EURORDIS) and National Organization for Rare Disorders (NORD), with resources and online communities to help patients with rare diseases interact with and learn from their peers and medical experts. RareConnect Castleman’s Disease Community is a joint project between the CDCN and CARE, which offers details on these advocacy groups, information about living with Castleman’s Disease, and a live forum. Members of the community can also contribute personal stories and submit questions. For more information, please visit http://www.rareconnect.org/en/community/castleman-disease
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 7,000 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
http://www.geneticalliance.org
The Genetic Alliance’s network includes more than 1,200 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.
European Organization for Rare Diseases (EURORDIS)
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.