The Board of Directors consists of representatives of Affiliate Organisations. They are appointed for three-year terms and serve as volunteers, without remuneration. They are appointed by the Board with the approval of the Council of Affiliates.
Chair, Dr. Rachel Giles
Rachel was appointed Associate Professor of Internal Medicine at the University Medical Center Utrecht in 2006. She came from a family with an inherited tumour syndrome and has been active in advocacy for patients with inherited kidney cancer since 2003. She researches how kidney cells are regulated and what goes wrong in the very early steps of kidney cancer. She is the Senior Medical Writer at Medicom Medical Publishers since 2019.
She has been chair of the Dutch VHL Organisation since 2009, and an international contact point for Living with Bladder or Kidney Cancer since 2010. Rachel has been Chair of the IKCC since 2014 and represents the IKCC on the EAU Guidelines Committee for renal cellcarcinoma.
Conflicts of Interest Form R. Giles
Vice-Chair, Deb Maskens
As co-founder of Kidney Cancer Canada (KCC), Deb has worked tirelessly to ensure equal access to high quality care for kidney cancer patients across Canada. A long-time kidney cancer patient herself, she is a frequent speaker at national and international cancer meetings where she provides the patient voice perspective along with sound advocacy knowledge and experience. For her role in establishing Kidney Cancer Canada, Deb has been recognised with the Meritorious Service Medal by Canada’s Governor General, the Queen’s representative in Canada.
She serves as a Patient Advocate on the U.S.-based National Cancer Institute (NCI) Renal Task Force. In Canada, she co-leads a coalition campaign of 35 cancer organisations (CanCertainty) toward full public coverage of take-home cancer medications. Deb is a founding member and Vice-Chair of the IKCC.
Conflicts of Interest Form D. Maskens
Berit has been involved in kidney cancer since 2009 following her partner’s diagnosis with papillary type II Renal Cell Carcinoma. To support him she researched the disease and its treatment. Knowing the needs of patients and caregivers in the same situation she established a patient support group and became an advocate for kidney cancer after her partner died. Berit is an active networker, connecting people with existing resources and highlighting gaps in services.
Being a cancer survivor herself she is committed to sharing her experience, bringing in the patient perspective into various publications (e.g. the German RCC guidelines but also scientific publications) and projects, as well as speaking at local, national and international meetings. Berit has been involved with the International Kidney Cancer Coalition since 2010. In 2017 she initiated a non-profit patient advocacy organisation Uronauten e.V., helping patients and caregivers with rarer genitourinary cancers to navigate their disease.
Conflicts of Interest Form B. Eberhardt
Dr. Michael Jewett
MD, FRCSC, FACS
Dr. Jewett is Professor of Surgery (Urology) at Princess Margaret Cancer Centre and the University of Toronto. He was an enthusiastic supporter of the founding of Kidney Cancer Canada and was the founding and immediate past-Chair of the Kidney Cancer Research Network of Canada. He was awarded the Canadian Cancer Research Alliance Award for Exceptional Leadership in Patient Involvement in Cancer Research in 2017.
He serves as Surgical Co-Chair on the USA National Cancer Institute’s Renal Task Force. He has published more than 350 peer reviewed papers, many about kidney cancer. He has had a long interest in many aspects of kidney cancer research, patient care and knowledge transfer. He is a leader in academic Urology, has received many awards and is a frequent guest at national and inter-national urological associations and has been a visiting professor in 25 countries to more than 100 university departments and institutions.
Conflicts of Interest Form M. Jewett
Dr. Eric Jonasch
Dr. Jonasch is Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Center at the University of Texas M. D. Anderson Cancer Center in Houston, Texas. He is director of the VHL Clinical Center at the MD Anderson Cancer Center, co-Director of the MD Anderson Kidney Cancer Research Program, and performs clinical, translational and basic research in kidney carcinoma and VHL disease.
Dr. Jonasch has authored over 190 articles published in peer-reviewed journals and is editor of the textbook: Kidney Cancer, Principles and Practice. Dr. Jonasch has a long history of service in the kidney cancer community. He serves as Vice-Chair of the NCCN Kidney Cancer Guideline Panel, is a member of the U.S. NCI Renal Task Force and is a Board member of the VHL Alliance.
Conflicts of Interest Form E. Jonasch
Bryan Lewis has led the advocacy efforts for KidneyCan – the Kidney Cancer Coalition – www.kidneycan.org. As a kidney cancer survivor, he has been an active legislative advocate and policy spokesman for the kidney cancer community in Washington, D.C. devoting most of his efforts to policy advocacy in the United States Congress & regulatory agencies. Most recently, he was successful in obtaining $20 million for the KCRP – Kidney Cancer Research Program (www.cdmrp.army. mil/kcrp/).
Bryan has also been appointed to the NCCN (National Comprehensive Cancer Network) Kidney Cancer Guidelines Panel. Previously, he held the positions of Vice President, Operations for Brand USA, and as Chief of Staff & General Counsel, U.S. Travel Association, a Washington, D.C.-based trade association.
Conflicts of Interest Form B. Lewis
Formerly CEO and Managing Director of Kidney Health Australia – Anne has been a member of the IKCC Board for the last four years. Since stepping down as CEO in May 2016, Anne has consulted to a number of not for profit organisations in Australia as well as having completed various projects in the health consumer space.
Anne pioneered Kidney Health Australia’s work in advocacy and support for Australians and their families affected by kidney cancer as well as having overseen the development of specific resources, a website, telephone information service and promotion of information about access to relevant clinical trials in Australia. As a Social Worker, Anne is passionate about equitable access to service delivery and the latest and most up-to-date information about all aspects of kidney cancer and patient support. Anne is Secretary/Treasurer of the IKCC and has been the Board lead for the management of World Kidney Cancer Day since its inception.
Conflicts of Interest Form A. Wilson
Rose is a long-term patient survivor of kidney cancer and a passionate and active patient advocate. She became involved in advocacy and patients’ rights in the UK in 2003 and later led the “Fight for Life” campaign for NHS funded KC treatments. She now runs the Kidney Cancer Support Network which is a grassroots patient led charity providing practical support and advocacy for the kidney cancer community in the UK. She enjoys a very busy life running the KCSN charity and is still dedicated to helping empower patients to play a full role in all aspects of their care.
Rose has just retired after serving 10 years as a full member of the National Cancer Research Institute Renal Cancer Group where she worked hard to establish meaningful patient involvement in all aspects of kidney cancer research ranging from clinical trial design through to survivorship studies. Rose is a founding member of IKCC and is also a Board Member which gives her the opportunity to help improve the lives of kidney cancer patients wherever they live in the world.
Conflicts of Interest Form R. Woodward
Joyce Graff founded in 1993 the VHL Family Alliance, a national non-profit organisation focused on von Hippel-Lindau (VHL). Over the next 20 years she oversaw its growth into an internation- al network of patient support groups for VHL and other hereditary kidney cancer syndromes. A cancer survivor herself (breast cancer, 1979), she has been the primary researcher and advocate for her husband and son with VHL since 1963.
She has written extensively on VHL, HLRCC, and pheochromocytoma. She served 10 years on the board of the National Organisation for Rare Disorders (NORD) and four years on the Director’s Consumer Liaison Group (DCLG) of the US National Cancer Institute. She has been a reporter for the Kidney Cancer Association International Symposia in Chicago (2011, 2012, and 2015). A frequent speaker at national and international cancer meetings, Joyce continues her patient advocacy work through the Powerful Patient and its weekly internet radio show. She is currently the Executive Director of the New England Regional Genetics Group.
Michael C. Herbst, PH.D.
Author and co-author of a large number of scientific papers and various books, Michael has written numerous scientific papers, both nationally and internationally. He was editor of Curationis, the Africa Journal of Nursing and Midwifery, and Nursing Update, a professional journal.
Michael was a member of staff of the Potchefstroom University for Christian Higher Education and University of South Africa. At the University of Venda, he was the first Professor and Head of the Department of Nursing Science and Acting Dean of the Faculty of Science. His advanced degrees include D Litt et Phil, D. N. Ed., and Dip. Occ. Health. Michael is currently Head of Health at the Cancer Association of South Africa. Michael has been accredited to provide online training to medical doctors, professional nurses, pharmacists and clinical social workers in oncology by the Health Professions Councils of Namibia.
Dr. Elizabeth Perdeaux
Dr. Lizzie Perdeaux is a Senior Medical Writer at Oxford PharmaGenesis, a HealthScience communications consultancy based in Oxford, UK. Lizzie previously worked at the Myrovlytis Trust, a medical research charity that also provides health information to patients with Birt–Hogg–Dubé syndrome, a rare inherited form of kidney cancer. Whilst at the Myrovlytis Trust, she was the main point of contact for patients seeking information about their disease and developed an interest in writing accessible information for patients.
Lizzie completed her undergraduate degree and PhD research, both in genetics, at the University of Cambridge, and undertook her Post-Doctoral research at the Institute of Cancer Research in London, investigating the genetic causes of Wilms Tumour, a type of kidney cancer that affects children..
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