Support and RESOURCES
Given the rarity and general lack of awareness of iMCD (even in the medical community) it is normal to feel in the dark about your condition. Many iMCD patients are looking for detailed information about how the condition will affect them in the future which can be hard to find when there are so few people diagnosed with it. However, the internet now enables communities of patients to connect with each other in ways that would have not been possible in the past.
CARENITY
Carenity is a platform that harnesses new technology to help people feel less alone with their condition. It connects people suffering from the same conditions by providing them with a free social network, newsfeed, discussion forums, private messaging and much more. Join Carenity and be connected with other iMCD sufferers from around the world today.
Castleman Disease
COLLABORATIVE NETWORK
The Castleman Disease Collaborative Network (CDCN) was founded by a physician and fellow iMCD sufferer. Since 2012 they have been addressing the need for advanced research, improved patient care and better connectivity for those with Castleman’s Disease.
World CASTLEMAN’S DISEASE DAY
World Castleman Disease Day is celebrated each year on July 23rd, and provides an opportunity for Castleman disease advocates worldwide – including patients, loved ones, physicians, and researchers – to come together in the fight against Castleman disease to support those currently living with the disease, as well as remember and honour those who we have lost.
Other
RESOURCES
There are many resources available for sufferers of rare diseases and associated support groups that offer non–specific guidance and advice for people who suffer from rare diseases in general. These can also help you connect locally with others who have rare diseases:
The following selection of patient organisations and social media groups may also help you to connect with others living with Castleman disease and iMCD:
RARECONNECT CASTLEMAN DISEASE COMMUNITY
CASTLEMAN DISEASE SUPPORT GROUP
INTERNATIONAL CASTLEMANS DISEASE ORGANIZATION
CASTLEMAN DISEASE COLLABORATIVE NETWORK
CASTLEMAN DISEASE COLLABORATIVE NETWORK
Patient
ASSOCIATIONS AND GROUPS
Region Map
•Brazil
•Canada
•Europe
•France
•Germany
•Italy
•Singapore
•Spain
•United Kingdom
•United States
BRAZIL
CANADA
EUROPE
CASTLEMANS DISEASE SUPPORT GROUP EUROPA
FRANCE
MALADIE DE CASTLEMAN : PATIENTS ATTEINTS
GERMANY
ITALY
Associazione Malati Italiani Castleman (AMICa)
Associazione Malati Italiani Castleman (AMICa)
SINGAPORE
SPAIN
UNITED KINGDOM
CASTLEMAN DISEASE SUPPORT GROUP
UNITED STATES
Sylvant® SUPPORT
If you have any questions about Sylvant® you can reach out to a EUSA Pharma medical information contact:
+44 (0) 3305001155
medicalinformation-uk@eusapharma.com
If you have more personal questions relating to your treatment and condition you should ask your doctor for guidance.
Useful resources that
YOU CAN DOWNLOAD
Find an EXPERT IN iMCD
If you would like to get in contact with an iMCD expert, the EuroCastleman website has a section called ‘Find a specialist’.
There, you will be able to locate Castleman disease specialists throughout Western Europe.
This website was set up by Dr Eric Oksenhendler, one of the leading experts worldwide in the study of MCD.