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“You Have Kidney Cancer”

You are one of nearly 1,100 people worldwide who will hear these words today: You Have Kidney Cancer. You are likely blindsided because kidney cancer rarely has symptoms – and when it does, the symptoms are similar to more common and less urgent conditions. Your cancer might have been discovered on a scan that was done for a totally unrelated issue. The doctor who told you about your diagnosis might be a physician that you have never met, such as an emergency room doctor. Or you might have just read about it on a radiology report without even having a doctor there to explain it to you. You feel like the floor just dropped out from under you. Here are some other things you are probably experiencing. Emotional Distress: The word cancer is terrifying. If you are like seventy percent of ...

Ciitizen – a new way to control your health data

My life changed in 2016 following a diagnosis of advanced kidney cancer. Going from doctor to doctor, the importance of accessible and shareable medical records became very clear to me. I still recall one day when I had to drive to THREE different hospitals to obtain copies of reports and images, to ensure they got to a new specialist in time for a scheduled appointment.  I’m happy to report there is a better way! Ciitizen is a new company that helps patients collect, organize, and share their medical records – free of charge.  By aggregating your records all in one place, you have control of your data and can easily transfer records when seeking a second opinion or enrolling in a clinical trial. I found the service very easy to use.  When I enrolled, I let Ciitizen know where I had ...

Kidney Cancer Caregivers

November is National Family Caregivers month – a time to honor kidney cancer caregivers. At KCCure, we routinely are asked how we can do more for caregivers. It’s a great question and part of our core mission. First and foremost, we’re working to highlight the diversity of roles in the caregiver experience. If we’re going to help people – it’s crucial that we know who we are helping and what their needs are. While the majority of kidney cancer caregivers are spouses – more than 35 percent of our caregiver population include people caring for someone other than a spouse. They are children caring for aging parents, parents caring for adult children, siblings caring for one another and friends caring for friends. KCCure is working to highlight the uni...

KCCure President Dena Battle elected to NCI Genitourinary Steering Committee (GUSC)

Kidney Cancer Research Alliance (KCCure) President Dena Battle has been elected to represent patients on the National Cancer Institute's Genitourinary Steering Committee(GUSC).  The primary focus of the committee is to address design prioritization and evaluation of concepts for phase 2 and 3 clinical trials in GU cancers. Her term is effective May 25, 2018 and will last through May 2021.

KCCure Launches National Kidney Cancer Patient Advisory Board

The Kidney Cancer Research Alliance (KCCure) announced today the formation of a national kidney cancer Patient Advisory Board; a non-voting body made up of patients, caregivers and leaders in the cancer community. The board will be led by patient advocates Michael B. Lawing and Debra Gottsleben.

KCCure President Dena Battle Elected to National Cancer Institute’s Renal Task Force

WASHINGTON - Kidney Cancer Research Alliance (KCCure) President Dena Battle has been elected to the National Cancer Institute’s Renal Task Force to serve as one of two patient advocates on the panel. 

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