Rare Cancer Research Foundation

The Rare Cancer Research Foundation describes itself as a 501(c)(3) nonprofit dedicated to curing rare cancers through strategic investments and collaborations that speed research and the use of promising therapies. It was started by Mark Laabs, whom its about page calls a pioneering rare cancer patient. Its patient programmes page says that since 2017 it has helped patients donate tissue directly to researchers from more than 150 hospitals, and that this has produced more than 75 research models of rare cancers; it coordinates overnight transport of living tissue after surgery to research projects or to its biobank, and also accepts stored tissue. Patients register through its platform Pattern.org, which runs the Pattern Biobank (including fee-based custodial storage of a patient's own tumour or blood for future clinical use) and the Pattern Data Commons for medical records and molecular data. Its research partners page names the Broad Institute's Cancer Cell Line Project, Cancer Dependency Map and PRISM lab, and the models it has supported are listed in the Broad's Cancer Cell Line Factory. Its partner page lists more than 60 patient advocacy groups, many of them foundations for a single rare cancer. The IRS record places it in Durham, with tax exemption issued in June 2014; its own site gives a mailing address in Durham and an EIN of 46-3405526.