Bill Paseman, CTO of rarekidneycancer.org, recently spoke at the National Cancer Institute (NCI) symposium “Cancer Moonshot Symposium on patient/participant-controlled data sharing”, held on September 26-27, 2019 in Bethesda, MD.
Rarekidneycancer.org specialists publish "Recommendations for the Management of Rare Kidney Cancers" in European Urology
Spearheaded by Axel Bex and Rachel Giles, a group of rare kideney cancer specialists recently published a definitive peer-reviewed paper "Recommendations for the Management of Rare Kidney Cancers" in European Urology.
Rare Disease Week on Capitol Hill brings rare disease community members from across the country together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.
Due to their small population, few resources and fewer clinical trials are devoted exclusively to patients with rare kidney cancer (also call "non clear cell renal cell carcinoma" or nccRcc).