KCCure is an evidence based, patient driven kidney cancer advocacy organization, dedicated to improving outcomes through outreach, education and research.
The Challenges We Face
There are 500,000 Americans living with kidney cancer and over 70,000 people will be diagnosed with the disease each year. In the last decade, many things have changed creating both opportunities and challenges for patients.
Digital transformation is shifting the patient-provider relationship from a traditional paternalistic model towards a model that is more equalized. Today’s patients have increased opportunities for life-saving treatments and more autonomy regarding their care – but they also are faced with the burden of making increasingly complex medical decisions in a short period of time.
These developments are occurring while the spread and flow of information for patients is dramatically expanding and changing.
Research shows that kidney cancer patients suffer from high rates of distress and anxiety. Fear and distrust create emotional barriers to care, making it harder for patients to fully understand risks and benefits of treatment options and engage in shared decision making with their providers.
Traditional sources of information that patients relied on in the past have changed as access to doctors has decreased. Today’s patients wait longer for appointments and have less time in clinic to discuss treatment options with their doctors. The quantity of information available via internet searches is overwhelming for patients, a problem that is exacerbated by an increase in low quality content. Fewer patients feel confident being able to discern what is accurate and what is not – creating knowledge barriers to care.
With multiple treatment choices available for patients to consider that offer similar efficacy outcomes, patient preference is becoming an increasingly important indicator for care decisions. Yet, patients have yet to be incorporated into the research process.
What We Do
Our goal is to reach as many patients as possible; to help them 1.) overcome emotional barriers to care by providing peer support; 2.) overcome knowledge barriers by giving them access to the latest evidence-based information in a format that is understandable and usable; and 3.) empower patients to drive funding priorities and ensure that their voice is represented in the research process.
We fund high-impact high-risk kidney cancer research through a process that is peer reviewed by an expert team of kidney cancer specialists, patients, caregivers and kidney cancer advocates. These grants provide sources of funding that otherwise wouldn’t be available to these researchers.
In addition to funding research, we conduct our own patient centered research aimed at improving the quality of lives of all kidney cancer patients by better identifying and defining the needs and wishes of patients.
Advances in treatment and new research related to the management of RCC have dramatically changed the landscape for patients and doctors. We create educational materials designed to answer questions that patients are asking wherever they are in their diagnosis as well as updated information on new treatments.
Our Resources Section includes information on Kidney Cancer Staging, Kidney Cancer Types, Kidney Cancer Grading, FDA approved treatments for Kidney Cancer, Clinical trials for Rare Kidney Cancer, and more.
If you’ve been diagnosed with kidney cancer, become an empowered patient at KCCure.
When faced with a new cancer diagnosis, our research shows that patients experience grief, loss of control and feelings of isolation. To help combat the emotional toll of cancer, we encourage patients to connect with one another and share their stories. These actions can help families impacted by kidney cancer feel less alone and are an important component of survivorship.
In-person cancer support groups can be hard to find for kidney cancer patients because it’s a rare disease. More information about on-line support groups can be found on our Kidney Cancer Patient Support Communities page.
Please note: The material on this site is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment for a specific medical condition. You should not use information on this website to diagnose or treat a health problem or disease and should consult with a qualified healthcare provider with any questions or concerns you may have regarding your condition.