On April 21-23, 2016, the William Guy Forbeck Research Foundation supported the first focus group meeting on Renal Medullary Carcinoma (RMC) in Nashville Tennessee. The Forbeck Foundation supports collaborative work to advance the development of cures for cancer; particularly rare cancers that affect children. To enhance knowledge about RMC, Drs. Rathmell and Tannir organized an international meeting of leading experts to further discuss the disease. There were 17 physicians and scientists from various specialties ( oncology, surgery, genetics, sickle cell disease, pathology and nephrology) that came together to better understand the epidemiology, pathology, genetics, biology and treatment of this particular cancer. Three advocates were given the opportunity to tell their story and share with the group how RMC impacted their lives.
The major goals of this focus meeting was: 1) To start a conversation about this cancer, and begin to establish standards an guidelines around RMC disease management. 2) To give voice to a community of patients, families, caregivers, an physician providers who are often isolated and in need of information for complex decision-making. And 3) To develop the plans for a consortium-based repository for data and tissue, and for the conduct of clinical trials.
We are hopeful that this event will trigger more meetings and set the stage for more research that will help patients diagnosed with RMC. It is our desire that federal funding will be allocated to assist with the advancement of research for this particular cancer.