New Localized Kidney Cancer Support Group

Have you been diagnosed with localized kidney cancer? KCCure has a new support community just for you. The KCCure 1-2-3 group is a support community for those managing a diagnosis of stage 1, stage 2 or stage 3 kidney cancer. Two thirds of patients will be diagnosed with localized kidney cancer – in other words, renal cell carcinoma in the kidney that has not spread into other organs. For almost all of these patients, the treatment will involve surgery to remove the cancer followed with close observation by their doctor. Despite the fact that most kidney cancer patients fall into this category, few resources exist for them to learn about their disease and connect with others.  Our research shows that kidney cancer patients – regardless of their stage – experience high degrees of anxi...

KCCure – Finding Quality of Life – Palliative Care

In the making a difference series, KCCure’s Director of Patient Engagement, Laura Loughlin, shares how connecting with palliative care improved her quality of life during radiation treatment, and explores how palliative care services can improve the quality of life for both patients and their families. When I was first diagnosed in 2016 with stage 4 RCC an oncologist told me that from that point forward my life would be a series of choices balancing quality vs. quantity of life.   When I was told this, I was hospitalized with side effects from my surgery and from high dose radiation to my thyroid due to a spread of the RCC.  My quality of life was poor, and I was offered palliative care.  At the time I was not aware of what palliative care was, but without a doubt palliative care become my...

KCCure Announces Kidney Cancer Research Award of $100,000 to UNC Lineberger

WASHINGTON – The Kidney Cancer Research Alliance (KCCure) announced today that $100,000 has been awarded to Dr. Qing Zhang and Dr. Xianming Tan at the Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill for their kidney cancer research proposal: TBK1 Serves as a Novel Therapeutic Target in Kidney Cancer with VHL Loss. “We are honored to receive this award from KCCure,” said Dr. Zhang. “This funding will provide vital resources for us to examine the efficacy of targeting TBK1 in kidney cancer either alone or in combination with currently FDA approved tyrosine kinase inhibitors. Our research will provide insight on validating TBK1 as novel therapeutic agent to benefit kidney cancer patients.” “Dr. Zhang’s research is highly innovative and could pave the path f...

Making a Difference – Rare Kidney Cancer Research

In the making a difference series, KCCure’s Director of Patient Engagement, Laura Loughlin, will be highlighting organizations making a difference in Kidney Cancer research. In this article we are profiling the work being done at The Rare Cancer Research Foundation (RCRF), with focus on their patient directed consent platform The Rare Cancer Research Foundation (RCRF) is a 501(c)3 nonprofit organization, committed to helping advance research to find cures for rare and under-represented cancers, including rare Kidney Cancers. This is a critical need as collectively rare cancers are the leading cause for cancer death in the US. The RCRF recognized that to advance research in this area a vehicle that allows patients to authorize tissue donation and collaborate with researchers is...

KCCure joins over 300 advocacy organizations urging Congress to protect Medicare part B

KCCure has joined with 339 other advocacy organizations urging Congress to halt implementation of a new pricing scheme that could negatively impact kidney cancer patients covered by Medicare. The “International Pricing Index” model, proposed by the Centers for Medicare & Medicaid Services (CMS) would affect 50 percent of physicians and hospitals serving Medicare Part B beneficiaries. Infusion based therapies fall under Medicare part B and would be subject to this experimental policy.  Reimbursement rates for life-saving kidney therapies would no longer be based on value or quality, but rather on reference prices determined by foreign countries.  The model would reduce access in the short term and hinder medical advancement in the long-term. Today, advanced kidney cancer pat...

Making a Difference – The Broad Institute

In the Making a Difference series, KCCure’s Director of Patient Engagement, Laura Loughlin will be highlighting organizations making a difference in Kidney Cancer research.  In this first article, we’re profiling work being done at the Broad Institute researching rare kidney cancer. The Broad Institute of Cambridge and Harvard Located in Cambridge, MA the Broad is a non-profit research organization partnered with MIT, Harvard and the five Harvard teaching hospitals.  On October 18th I had the opportunity to visit the Broad.  I attended a Pre-Launch Workshop for the Rare Cancer Dependency Map Initiative.  This initiative provides a patient driven research platform seeking treatments for rare kidney cancers.  The research starts with patients’ authorizing donation of fresh tissue...

Treatment for Metastatic Kidney Cancer Edges Toward Approval

AVEO Oncology announced today that the Phase 3 TIVO-3 Trial of Tivozanib in metastatic kidney cancer has met its primary endpoint.

Gene Therapy – An RCC Clinical Trial at the NIH

KCCure highlights new and exciting research in kidney cancer at the NIH as well as an RCC clinical trial that is open now for kidney cancer patients.

ESMO18 – Kidney Cancer Updates

KCCure reports live from #ESMO18 on kidney cancer updates and what we learned from the experts.

Lawing to Present on Rare Kidney Cancer at AACR Conference

Michael B. Lawing, Director of Outreach, KCCure has been selected to participate in the Scientist <-> Survivor Program at the 11th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved Nov. 2-5, 2018 in New Orleans, LA. The conference will address all levels of basic, population, clinical, and transdisciplinary research related to cancer and will bring together physicians, scientists, health professionals, and health care leaders working in a variety of disciplines to discuss the latest findings in their fields. Patient Advocates attending the meeting will communicate to scientists the key issues, questions, and concerns of the survivor and patient advocacy communities; and network with scientists and fellow advocates fr...

Letter to Kidney Cancer Journal and Response – Regarding Checkpoint Inhibitors in Non-Clear Cell RCC

Attached is a letter to the editor of the Kidney Cancer Journal and editorial response regarding the use of checkpoint inhibitors in non-clear cell RCC. We’re grateful to the editors of the journal for graciously providing this update for patients with rare types of kidney cancer. KCJ letter

KCCure urges Congress and CMS to Reconsider Misguided Medicare Changes

KCCure joins 239 advocacy organizations asking Congress and CMS to reconsider changes allowing Medicare Advantage plans to implement a new policy that could negatively impact Medicare patients with kidney cancer.

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