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Affiliates News Article Research

NEWS

KCCure to award large research grant

2 minutes read

http://kccure.org/wp-content/uploads/2016/11/2017-Research-Grant-Award.pdf

by Susan Poteat and Hans Hammers, M.D.

KCCure is pleased to announce an inaugural Request for Applications for a $100,000 Grant Award to fund innovative high-risk, high-impact ideas for kidney cancer research. The application deadline is March 15, 2017. The grant will be awarded in April 2017, and funding will cover a research project for a two year period. Investigators representing academic research centers within the United States are eligible to apply.

Proposed projects should develop a new research direction, explore an innovative idea, test an unconventional, but potentially important new hypothesis, or ascertain the feasibility of a new research approach. The grant application instructions are available on the KCCure website: and we encourage IKCC newsletter readers to share this opportunity with researchers who work in the field of kidney cancer:

KCCure is an organization of patients, caregivers, doctors and medical researchers dedicated to eliminating kidney cancer through increased funding to accelerate research. Grant applications will be reviewed by member of the KCCure Scientific Advisory board. The review of proposals by researchers in the field of kidney cancer will ensure that a high quality, timely and promising scientific research is selected.

According to the American Cancer Society, of the 782 grants awarded for cancer research in 2016, only nine were made available to kidney cancer. Lack of access to “seed” money for early research makes it more difficult for kidney cancer researchers to further develop their ideas and access additional funding from other sources such as DOD or NCI grants.

KCCure’s goal is to increase funding to accelerate early stage research that will lead to a cure for all patients and prevent future kidney cancer diagnoses. Operations are funded primarily through contributions from the public, including individuals, nonprofit organizations, and corporations with funds going toward research grants designated for kidney cancer.

This grant award is our first pilot project toward our goal of increasing the number of high quality research projects directed toward finding a cure for kidney cancer. Please help us make it a success by sharing the Request for Application with researchers in your circle who have a special interest in kidney cancer.

Please see this link on our web site for more complete information.

Press Releases

The Committee for Medicinal Products for Human Use (CHMP), part of the European Medicines Agency, has handed down a negative opinion on the approval of combination ipilimumab and nivolumab for the frontline treatment of advanced renal cell carcinoma. The main reason for this decision is the lack of a nivolumab monotherapy arm in the study. […]

Immunotherapy Combination Denied Regulatory Approval in Europe

Interview with Prof. Chapple – Co-operation with patient organisations

Affiliates News Article Clear cell ccRCC Support Groups

GCCN: Virtual event examining the effects of COVID-19 on cancer communities

NEWS

VHLFA Greece gains widespread press coverage

2 minutes read

VHLFA Greece has been doing some pretty amazing work in putting von Hippel-Lindau and kidney cancer on the map!

With the help of Perceptions Consulting (www.perception.com.gr) they organized a press conference at Divani Caravel, a large central hotel in Athens, to interest the press in this rare cancer syndrome. VHL causes multiple problems, including kidney cancer and brain tumors. About 25 health reporters attended the press conference last July, with presentations by a urologist, a geneticist, an endocrinologist, and the patient president of VHLFA Greece. As a result, there have been more than 100 references in newspaper and internet articles. The health reporter community is finding VHL research a fascinating topic, as it opened the door to genetic research on kidney cancer in general.

VHLFA Greece has already identified 25 extended families with many members affected by VHL. They have translated the VHL Handbook into Greek, making it available for purchase through Amazon.com. They have doctors on their team in Athens and Thessaloniki, and are working to develop a center of excellence for treatment of VHL and other kidney cancers in major hospitals in Athens and Thessaloniki.

They have joined forces with Eurordis, ECPC, PESPA, IKCC and of course the VHL Alliance International (US).

The following internet resources are available in Greek and can be translated using automated translation in your browser:

For one example of the coverage from this press conference, see this web page in Greek which can be easily translated into English or another language http://healthday.gr/index.php/el/health/1169-vhl-to-adiagnosto-syndromo-klironomikou-karkinou

Press Releases

Immunotherapy Combination Denied Regulatory Approval in Europe

Interview with Prof. Chapple – Co-operation with patient organisations

Article Clinical Trials Research

GCCN: Virtual event examining the effects of COVID-19 on cancer communities

NEWS

IKCC voice on the NCI Renal Task Force

1 minute read

As of December 2016, there are now TWO patient advocates on the NCI Renal Task Force.

The US National Cancer Institute’s Renal Task Force is an advisory group that involves the renal oncology community to address the design and prioritization of NCI funded phase 2 and phase 3 clinical trials in renal cell cancer.
https://www.cancer.gov/about-nci/organization/ccct/steering-committees/nctn/genitourinary

Deb Maskens joins the Task Force as a Patient Advocate from the IKCC (International Kidney Cancer Coalition) along with Carrie Konosky of the Kidney Cancer Association (KCA).

“My goals,” says Deb Maskens, “are for us to co-design clinical trials that work for real RCC patients, to accrue those (well designed) trials as quickly as possible, and to get the results out faster in the clearest possible way. All of that is going to take a strong patient advocacy voice and I will do my very best to BE that voice on behalf of all of you. Please let me know if there are issues regarding clinical trials that you want to see prioritized. Thank you, and all the best for a positive 2017 year ahead for ALL of us!”

ESMO Highlights from the International Kidney Cancer Coalition

Article

Berit Eberhardt represented IKCC at the European Society for Medical Oncology conference in Copenhagen, October 2016. The theme of our booth was “An apple a day … keeps the doctor supporting patients with kidney cancer!” The booth was very busy! Berit explained our current and planned projects, and chatted with visitors about clinical trials, 10 […]

2016 ESMO Copenhagen

44 Ways to Make the Day of Someone With Cancer

Article

Patient stories

submitted by Berit Eberhardt, Das Lebenshaus, Germany I have found many of the tips in this article useful in Germany for our patients with kidney cancer — and others, not. You could modify this list for use in your own organisation. http://www.huffingtonpost.com/elana-miller-md/living-with-cancer_b_5660514.html

44 Ways to Make the Day of Someone With Cancer

NEWS

44 Ways to Make the Day of Someone With Cancer

Article Patient stories

1 minute read

http://www.huffingtonpost.com/elana-miller-md/living-with-cancer_b_5660514.html

submitted by Berit Eberhardt, Das Lebenshaus, Germany

I have found many of the tips in this article useful in Germany for our patients with kidney cancer — and others, not. You could modify this list for use in your own organisation.

Patient Champions improve clinical trial awareness

Patient Champions improve clinical trial awareness

The KCSN Patient Champion Programmed works to build awareness of clinical trials and encourage patients to consider participation.

KCCure to award large research grant

by Susan Poteat and Hans Hammers, M.D. KCCure is pleased to announce an inaugural Request for Applications for a $100,000 Grant Award to fund innovative high-risk, high-impact ideas for kidney cancer research. The application deadline is March 15, 2017. The grant will be awarded in April 2017, and funding will cover a research project for […]

VHLFA Greece gains widespread press coverage

VHLFA Greece gains widespread press coverage

VHLFA Greece has been doing some pretty amazing work in putting von Hippel-Lindau and kidney cancer on the map! With the help of Perceptions Consulting (www.perception.com.gr) they organized a press conference at Divani Caravel, a large central hotel in Athens, to interest the press in this rare cancer syndrome. VHL causes multiple problems, including kidney […]

NEWS

2016 ESMO Copenhagen

Article

1 minute read

The KCSN Patient Champion Programmed works to build awareness of clinical trials and encourage patients to consider participation.

Berit Eberhardt represented IKCC at the European Society for Medical Oncology conference in Copenhagen, October 2016.

The theme of our booth was “An apple a day … keeps the doctor supporting patients with kidney cancer!”

An apple a day ...

The booth was very busy! Berit explained our current and planned projects, and chatted with visitors about clinical trials, 10 for IO, and our growing number of Affiliate groups worldwide.

Visitors

Patient Champions improve clinical trial awareness

KCCure to award large research grant

VHLFA Greece gains widespread press coverage

NEWS

ASCO’s 12th Annual Report on Progress Against Cancer

Article Clinical Trials Drug treatments Immuno-Oncology Research Treatment Options

1 minute read