For patients
Rare Cancers Australia (RCA) is a charity and support group for patients diagnosed with rare cancers. RCA focuses on: creating a patient community, advocacy, support programs, fundraising, treatment and research.
Cart-wheel is an online questionnaire that allows consumers to input their own rare cancer information for collective consumer driven research programs. An example of this is the WhiMSICAL study being undertaken in Waldenstrom’s Macroglobulinemia.
For clinicians
The Australian Rare Cancer Portal is an online portal providing access to rare cancer experts, genomic testing and research.
https://www.thelancet.com/series/rare-cancers
This Lancet Oncology special series on rare cancers introduces the concept of rare cancers and the importance of consortiums and collaborative efforts in improving rare cancer care.
The RARECAREnet database examined the epidemiology of rare cancers in Europe representing 27 European countries. Their website provides a useful resource for understanding rare cancer types and their incidence.
