{"entity":{"id":"rare-cancer-research-foundation","kind":"institution","name":"Rare Cancer Research Foundation","aka":["RCRF","The Rare Cancer Research Foundation"],"tldr":"A US nonprofit in Durham, North Carolina, that lets people with a rare cancer donate their tumour tissue and medical records directly to researchers, through its platform Pattern.org, at no cost to them.","summary":"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.","asOf":"2026-11-05","links":[{"label":"About RCRF","url":"https://rarecancer.org/about-rcrf"},{"label":"RCRF: patient programmes","url":"https://rarecancer.org/patient-programs"},{"label":"RCRF: tissue and fluid donation","url":"https://rarecancer.org/tissue-fluid-donation"},{"label":"RCRF: research partners","url":"https://rarecancer.org/research-partners"},{"label":"RCRF: our initiatives","url":"https://rarecancer.org/initiatives"},{"label":"Rare Cancer Research Foundation: patient advocacy partners","url":"https://rarecancer.org/patients-advocacy-partners"},{"label":"IRS record (via ProPublica Nonprofit Explorer)","url":"https://projects.propublica.org/nonprofits/organizations/463405526"}],"tags":[],"related":["pattern-org","alliance-for-rare-cancers","depmap","cdmrp-rcrp","chordoma-foundation","netrf","sarcoma-foundation-of-america","jedi-rare-cancer-foundation","accrf","a-cure-in-sight","acpmp-research-foundation","angiosarcoma-awareness","brave-like-gabe","chondrosarcoma-foundation","chromophobe-oncocytic-tumor-alliance","clear-cell-sarcoma-foundation","desmoid-tumor-research-foundation","dragon-master-initiative","ehe-foundation","guided-path","lmsdr","leptomeningeal-cancer-foundation","max-vincze-foundation","mib-agents","national-leiomyosarcoma-foundation","northwest-sarcoma-foundation","oligo-nation","pheo-para-alliance","rein-in-sarcoma","sam-day-foundation","sarcoma-alliance","smarcb1-hope","targetcancer-foundation","thyca","childrens-tumor-foundation","lungevity","mra","kidney-cancer-association"],"cancers":["sarcoma","rare-childhood-cancers","adenoid-cystic-carcinoma","chordoma","uveal-melanoma","nut-carcinoma","renal-medullary-carcinoma"],"sections":[],"technologies":["biobanking","organoids"],"targets":[],"drugs":[],"companies":[],"institutions":["broad-institute","case-ccc"],"pathways":[],"terms":["rare-cancers"],"trials":[],"people":[],"bottlenecks":["b-rare-cancers"],"keyPapers":[],"journals":[],"dependsOn":[],"notes":["The initiatives page says the foundation has worked with patients, foundations and researchers since 2014; the patient programmes page dates its tissue donation work from 2017. The IRS ruling date is June 2014. The home and initiatives pages give older counts (120+ hospitals, 65+ models) than the patient programmes page (150+, 75+); the newer counts are used.","Pattern.org's footer gives a different EIN (46-2205520) from the foundation's own site (46-3405526); the IRS record under the foundation's name is 46-3405526."],"city":"Durham, NC","country":"US","lat":35.994,"lng":-78.899,"institutionType":"consortium","website":"https://rarecancer.org","programs":["Tissue and fluid donation to researchers through Pattern.org","Pattern Biobank, including custodial biobanking for patients","Pattern Data Commons for donated medical records and molecular data","Support for patient-derived cell line and organoid models","Connecting patients to genomic sequencing"]},"route":"/institutions/rare-cancer-research-foundation/","neighbours":{"collection":[{"id":"depmap","kind":"collection","name":"DepMap (Cancer Dependency Map)","route":"/collections/depmap/"},{"id":"lungevity","kind":"collection","name":"LUNGevity Foundation (and GO2 for Lung Cancer)","route":"/collections/lungevity/"},{"id":"pattern-org","kind":"collection","name":"Pattern.org and the Pattern Biobank","route":"/collections/pattern-org/"}],"institution":[{"id":"a-cure-in-sight","kind":"institution","name":"A Cure In Sight","route":"/institutions/a-cure-in-sight/"},{"id":"accrf","kind":"institution","name":"Adenoid Cystic Carcinoma Research Foundation","route":"/institutions/accrf/"},{"id":"alliance-for-rare-cancers","kind":"institution","name":"Alliance for Rare Cancers","route":"/institutions/alliance-for-rare-cancers/"},{"id":"angiosarcoma-awareness","kind":"institution","name":"Angiosarcoma Awareness","route":"/institutions/angiosarcoma-awareness/"},{"id":"acpmp-research-foundation","kind":"institution","name":"Appendix Cancer Pseudomyxoma Peritonei Research Foundation","route":"/institutions/acpmp-research-foundation/"},{"id":"brave-like-gabe","kind":"institution","name":"Brave Like Gabe Foundation","route":"/institutions/brave-like-gabe/"},{"id":"broad-institute","kind":"institution","name":"Broad Institute of MIT and Harvard","route":"/institutions/broad-institute/"},{"id":"case-ccc","kind":"institution","name":"Case Comprehensive Cancer Center","route":"/institutions/case-ccc/"},{"id":"childrens-tumor-foundation","kind":"institution","name":"Children's Tumor Foundation","route":"/institutions/childrens-tumor-foundation/"},{"id":"chondrosarcoma-foundation","kind":"institution","name":"Chondrosarcoma Foundation","route":"/institutions/chondrosarcoma-foundation/"},{"id":"chordoma-foundation","kind":"institution","name":"Chordoma Foundation","route":"/institutions/chordoma-foundation/"},{"id":"chromophobe-oncocytic-tumor-alliance","kind":"institution","name":"Chromophobe and Oncocytic Tumor Alliance","route":"/institutions/chromophobe-oncocytic-tumor-alliance/"},{"id":"clear-cell-sarcoma-foundation","kind":"institution","name":"Clear Cell Sarcoma Foundation","route":"/institutions/clear-cell-sarcoma-foundation/"},{"id":"desmoid-tumor-research-foundation","kind":"institution","name":"Desmoid Tumor Research Foundation","route":"/institutions/desmoid-tumor-research-foundation/"},{"id":"dragon-master-initiative","kind":"institution","name":"Dragon Master Initiative","route":"/institutions/dragon-master-initiative/"},{"id":"ehe-foundation","kind":"institution","name":"EHE Foundation","route":"/institutions/ehe-foundation/"},{"id":"guided-path","kind":"institution","name":"Guided Path Appendix Cancer Support","route":"/institutions/guided-path/"},{"id":"jedi-rare-cancer-foundation","kind":"institution","name":"Jedi Rare Cancer Foundation","route":"/institutions/jedi-rare-cancer-foundation/"},{"id":"kidney-cancer-association","kind":"institution","name":"Kidney Cancer Association","route":"/institutions/kidney-cancer-association/"},{"id":"lmsdr","kind":"institution","name":"Leiomyosarcoma Support & Direct Research Foundation","route":"/institutions/lmsdr/"},{"id":"leptomeningeal-cancer-foundation","kind":"institution","name":"Leptomeningeal Cancer Foundation","route":"/institutions/leptomeningeal-cancer-foundation/"},{"id":"max-vincze-foundation","kind":"institution","name":"Max Vincze Foundation","route":"/institutions/max-vincze-foundation/"},{"id":"mra","kind":"institution","name":"Melanoma Research Alliance","route":"/institutions/mra/"},{"id":"mib-agents","kind":"institution","name":"MIB Agents","route":"/institutions/mib-agents/"},{"id":"national-leiomyosarcoma-foundation","kind":"institution","name":"National Leiomyosarcoma Foundation","route":"/institutions/national-leiomyosarcoma-foundation/"},{"id":"netrf","kind":"institution","name":"Neuroendocrine Tumor Research Foundation","route":"/institutions/netrf/"},{"id":"northwest-sarcoma-foundation","kind":"institution","name":"Northwest Sarcoma Foundation","route":"/institutions/northwest-sarcoma-foundation/"},{"id":"oligo-nation","kind":"institution","name":"Oligo Nation","route":"/institutions/oligo-nation/"},{"id":"pheo-para-alliance","kind":"institution","name":"Pheo Para Alliance","route":"/institutions/pheo-para-alliance/"},{"id":"rare-cancers-australia","kind":"institution","name":"Rare Cancers Australia","route":"/institutions/rare-cancers-australia/"},{"id":"cdmrp-rcrp","kind":"institution","name":"Rare Cancers Research Program (CDMRP)","route":"/institutions/cdmrp-rcrp/"},{"id":"rein-in-sarcoma","kind":"institution","name":"Rein in Sarcoma","route":"/institutions/rein-in-sarcoma/"},{"id":"sam-day-foundation","kind":"institution","name":"Sam Day Foundation","route":"/institutions/sam-day-foundation/"},{"id":"sarcoma-alliance","kind":"institution","name":"Sarcoma Alliance","route":"/institutions/sarcoma-alliance/"},{"id":"sarcoma-foundation-of-america","kind":"institution","name":"Sarcoma Foundation of America","route":"/institutions/sarcoma-foundation-of-america/"},{"id":"smarcb1-hope","kind":"institution","name":"SMARCB1 Hope","route":"/institutions/smarcb1-hope/"},{"id":"targetcancer-foundation","kind":"institution","name":"TargetCancer Foundation","route":"/institutions/targetcancer-foundation/"},{"id":"thyca","kind":"institution","name":"ThyCa: Thyroid Cancer Survivors' Association","route":"/institutions/thyca/"}],"cancer":[{"id":"adenoid-cystic-carcinoma","kind":"cancer","name":"Adenoid cystic carcinoma","route":"/cancers/adenoid-cystic-carcinoma/"},{"id":"chordoma","kind":"cancer","name":"Chordoma","route":"/cancers/chordoma/"},{"id":"nut-carcinoma","kind":"cancer","name":"NUT carcinoma (midline carcinoma with NUTM1 rearrangement)","route":"/cancers/nut-carcinoma/"},{"id":"rare-childhood-cancers","kind":"cancer","name":"Rare cancers of childhood (NCI PDQ umbrella)","route":"/cancers/rare-childhood-cancers/"},{"id":"renal-medullary-carcinoma","kind":"cancer","name":"Renal medullary carcinoma (SMARCB1-deficient)","route":"/cancers/renal-medullary-carcinoma/"},{"id":"sarcoma","kind":"cancer","name":"Sarcomas (soft tissue, bone, GIST)","route":"/cancers/sarcoma/"},{"id":"uveal-melanoma","kind":"cancer","name":"Uveal melanoma","route":"/cancers/uveal-melanoma/"}],"technology":[{"id":"biobanking","kind":"technology","name":"Biobanking and tissue procurement","route":"/technologies/biobanking/"},{"id":"organoids","kind":"technology","name":"Patient-derived organoids","route":"/technologies/organoids/"}],"term":[{"id":"rare-cancers","kind":"term","name":"Rare cancers","route":"/terms/rare-cancers/"}],"bottleneck":[{"id":"b-rare-cancers","kind":"bottleneck","name":"Rare and paediatric cancers without markets","route":"/bottlenecks/b-rare-cancers/"}]}}