The CDCN has partnered with the European Organisation for Rare Diseases (EURODIS) and the National Organization for Rare Disorders (NORD) to launch a Castleman disease patient community on the RareConnect platform. RareConnect is a safe and easy to use platform that has created an international community for Castleman disease survivors and their loved ones can develop online communities and conversations across continents and languages, which is translated into 5 different languages.
You can join or visit our patient community here.
If you're a physician or researcher, you can connect with your community here.
As a patient community, the RareConnect platform offers many advantages including:
- Message posts can be translated into English, French, Italian, Spanish, German, and Japanese
- Message posts can be tagged, archived and searched for future reference
- Patients can privately message other patients and users
The translation function of RareConnect is especially important for rare diseases such as Castleman, where the patient community is small and spread throughout the world.
The RareConnect Castleman community was launched in April of 2014 and has been growing rapidly. The community includes members from countries as diverse as Australia, Japan, Netherlands, Argentina, Brazil, Italy and the United States.
The community moderators are knowledgable about Castleman disease and able to answer many questions. They include:
- Raj Jayanthan, CDCN
- Mileva Repasky, CDCN
- Robert Pleticha, EURODIS
- Jim Johnston, ICDO
- Greg Pacheco, CDCN