I was talking with researchers at the Society for Immunotherapy of Cancer Conference this past weekend, lamenting the fact that kidney cancer often gets the short stick when it comes to research. As a rare disease, it’s harder to get companies to focus on new drugs and trials and harder to get federal or even private funding. That’s why we started KCCure.
But kidney cancer isn’t a homogenous disease. There are rare subtypes that get even less attention. They deserve more support.
Renal Medullary Carcinoma (RMC) is a rare type of kidney cancer that affects young adults who carry the sickle cell trait. It’s a disease that is so aggressive, many patients die within months of diagnosis. These are young healthy adults, so their cancers often go undetected for longer. Doctors simply aren’t looking for cancer in someone of their age, and because it’s so rare, many doctors aren’t even aware of it.
If you do an Internet search for renal medullary carcinoma, you won’t find much. But you will find Cora Conner. When Cora’s brother was diagnosed with RMC, she did what most of us do. She tried to find information. She tried to find support groups. But nothing existed.
So she did what no one else had done: she created one. Cora wrote:
“Following my brother’s diagnosis, I felt the urgent need to start R.M.C. Support. The community as well as the world needs to be aware of this cancer and its aggressiveness. This orphan disease needs immediate attention, so that patients can get the care that they deserve and doctors can advance research to find a cure.”
As an advocate for all kidney cancer research, KCCure stands with Cora to advance the efforts of RMC Support. Will you join us? Here’s how you can help:
- Sign the RMC support Change.org petition to help highlight this disease and raise awareness.
- If you know someone who has been diagnosed or if you are facing a diagnosis yourself, participate in the RMC Support Registry to help researchers gather more information about the disease.
- “Like” the RCM Support Facebook page.
Finding a cure for kidney cancer demands a collective effort. Together, we can raise the awareness and funding we need to advance research for new treatments and ultimately a cure.