What is Chromphobe RCC and why is the KCCure Chromophobe Research Program so important?
Chromophobe RCC is a rare subtype of kidney cancer accounting for roughly 5 percent of RCC tumors. When discovered early, this histological type is less likely to spread to other parts of the body. However, once the disease becomes metastatic, survival rates are poor.
Nearly twenty new treatments have been approved by the FDA to treat kidney cancer in the past decade. However, these treatments have all been established in clear cell RCC patients, the most common form of the disease. No treatments have been identified for chromophobe RCC.
The Challenges We Face:
Finding cures for any type of cancer is hard, but rare cancers face even more challenges. For rare types of kidney cancer – three of the most significant barriers are:
- Limited funding resources. From a policy perspective and a fundraising perspective, there is greater incentive to drive resources toward diseases that impact larger groups of people. As a result – both private and public research dollars are geared toward the most common type of kidney cancer.
- Lack of scientific expertise. Doctors’ careers depend on their ability to get funding for their research. Sparse research dollars mean that new doctors and researchers are disincentivized from focusing on rare diseases.
- Fewer patients. Small patient populations mean that most doctors only see one or two patients with a rare kidney cancer. When patients are treated at different centers, by different doctors –information about their disease and how it is treated cannot be aggregated and information remains siloed. Small patient populations make it nearly impossible for clinical trials to test new treatments because not enough patients can be accrued at enrolling centers.
What KCCure is doing to address these needs:
Bringing together patients, scientists and resources is what we most urgently need to achieve scientific breakthroughs for rare kidney cancers.
Patient Driven Research Grants: The KCCure Chromophobe Research Grant is the first and only funding mechanism that specifically funds chromophobe kidney cancer research. These seed grants incentivize doctors to focus on this rare subtype and help them generate preliminary data allowing them to compete for even larger awards.
Medical Advisory Board: The KCCure Chromophobe Medical Advisory Board will bring together a multidisciplinary team of scientists dedicated to curing chromophobe RCC. This group will be focused on breaking down silos, sharing research and developing common goals.
Patient Engagement: KCCure communities bring patients together, empower them to advocate change, and share and aggregate information to advance research. Our on-line Chromophobe Community is the fastest growing group for patients with this rare subtype and is the ideal space to aggregate information and launch a new patient registry to promote clinical trial readiness.
What you can do to help:
- Join the KCCure Chromophobe RCC Patient Community and encourage others to join as well.
- Host a Facebook fundraiser or donate to the Chromophobe RCC grant program so we can continue to award even more seed funds for chromophobe research.
- Tune in for webinars with members of the Chromophobe Medical Advisory Board and other leading researchers to learn about their outstanding work and provide the patient perspective by asking questions that are important to you.
- Participate in KCCure surveys to inform the field about Chromophobe RCC Patient needs. Help build and grow a patient registry to increase clinical trail readiness.
- Raise awareness about KCCure’s patient-driven, evidence-based approach to kidney cancer advocacy.
Curing rare cancers is hard, but together we can overcome the challenges we face.