How Can Renal Medullary Carcinoma Patients Advocate for Research?
More Programs and Publications Featuring Dr. Kimryn Ratthmell
In this program:
Renal medullary carcinoma research has had some recent wins but still has room for improvements. Watch as expert Dr. Kimryn Rathmell from Vanderbilt University Medical Center shares updates about organizations that are investigating or funding RMC research and how patients can advocate for increased RMC research funding.
Transcript
Dr. Kimryn Rathmell:
Patients can do a lot. So one big win that I'll tell you, but it continues to need advocacy, is the Department of Defense, believe it or not, funds kidney cancer research, that's fairly new, that's entirely based on advocacy to say that the government needs to put more money into kidney cancer research. So fortunately, Nizar Tannir, MD and I were both on the initial steering committee, we're both sort of the instigators of the Renal Medullary Carcinoma Physician Alliance, along with some other people we were fortunately on the steering committee of what should that fund. And we're able to advocate that they should put money towards rare kidney tumors of which renal medullary carcinoma was the poster child for that. And that group has funded quite extensively in renal medullary carcinoma.
So, what can people do? One is talk to their congressmen and say that funding for kidney cancer research and particularly for rare tumors of the kidney needs to continue. So that's a real thing. People can drop a quick email, it really gets read by somebody, and that continues that funding, so that's the biggest pot we have...people can also advocate for the National Cancer Institute to put funds for rare kidney cancer research, and there's a portal for advocates to make suggestions, and then I think also being aware of these smaller organizations, they're powerful, because what these organizations put together, all are linked to the renal medullary carcinoma alliance, they can help individual investigators find research funding, it's a all big social network. They can also help. For example, we have people who studied the gene that drives renal medullary carcinoma, not sickle cell, but they're not sickled, but there's another gene who have found their way to say, “Woah, I've been doing research on this chromatin-modifying gene for a long time, now I'm finding out is involved in this rare kidney tumor, maybe I should also be studying this, right.” Kidney tumor, and those of us in the field say, yes, absolutely, you should, but they find their way often through these kinds of organizations, so I think being aware of finding an organization that you trust and feel like gives you the best information, whether that's through Twitter or some other...
Or this kind of platform, I think can help people stay abreast of what's new and what's needed too.
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