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.
Rachel is a staff/faculty member of Internal Medicine at the University Medical Center Utrecht. 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 is running a research lab that is dedicated to understanding how kidney cells are regulated and what goes wrong in the very early steps of kidney cancer.
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 currently Chair of the IKCC and represents the IKCC on the EAU Guidelines Committee for renal cell carcinoma.
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 is leading a successful coalition campaign of 35 cancer organisations (CanCertainty) toward full public coverage of oral cancer medications. Deb is a founding member and Vice-Chair of the IKCC.
Berit was caregiver to her significant other who died at age 39 just one year after diagnosis with kidney cancer. She learned about the disease, its treatment and the needs of patients and caregivers in the same situation. She shared her knowledge by establishing a patient support group in her home town. Shortly after, she became manager of kidney cancer of Das Lebenshaus e.V.
Berit’s interest in kidney cancer propels her to raise awareness, connecting people with existing resources and highlighting gaps in services. She works persistently to establish new ideas, materials, and support for those affected by kidney cancer. She provided the patient perspective for the German Kidney Cancer Guidelines, represents the IKCC on the Patient Advisory Committee of the ECCO (European CanCer Organisation) speaks on kidney cancer topics at German and EU meetings, and is IKCC co-lead for medical treatment and care.
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.
MD, FRCSC, FACS
Dr. Jewett is Professor of Surgery (Urology) at Princess Margaret Cancer Centre and the University of Toronto where he holds the Farquaharson Clinical Research Chair in Oncology. He has been a member of the US NCI Renal Task Force since its inception and is currently Co-Chair. 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 holds peer reviewed funding and has published more than 350 peer reviewed papers. His research is currently focused in kidney cancer but he has published extensively in other UroOncology subjects, clinical trials, technology assessment and medical informatics. He has had a long interest in many aspects of kidney cancer research, patient care and knowledge transfer. He has been a leader in academic Urology, has received many awards and is a frequent guest at national and international urological associations and has been a visiting professor in 25 countries to more than 100 university departments and institutions.
Dr. Jonasch is Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine, at the MD Anderson Cancer Center of The University of Texas, where he is also Co-Chair of the Renal Cancer Program. Since 2003 he has been the Director of the Von Hippel Lindau (VHL) Clinical Center in Houston. He performs clinical, translational, and basic research in VHL disease and kidney cancer. Dr. Jonasch is a member of the American Association for Cancer Research, the American Society of Clinical Oncology, the American Urological Association, and the National Comprehensive Cancer Network. Additionally, Dr. Jonasch has published widely in many peer-reviewed journals and has contributed to and published various books.
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.
Formerly CEO and Managing Director of Kidney Health Australia – Anne has been a member of the IKCC Board for the last two 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.
As Secretary/Treasurer of the IKCC Anne is also overseeing the development of the first World Kidney Cancer Day in 2017 and is a member of the International Decision Aid Steering Committee.
Rose is a patient survivor of kidney cancer. She founded the Kidney Cancer Support Network in 2006 to provide much needed information, support and advocacy for kidney cancer patients, their carers and families. The organisation has grown to become the most widely used and most active patient-led charity in the UK supporting people affected by kidney cancer. Rose enjoys a very active life as a committed and experienced patient advocate dedicated to empowering patients to play a full role in all aspects of their own care. Rose serves as a full member of the National Cancer Research Institute renal cancer studies group where she works hard to promote the proven benefits of patient involvement in all aspects of research ranging from clinical trial design through to survivorship studies. Rose is proud to be a founding member of the IKCC and honoured to be a Board Member to help improve the lives of kidney cancer patients wherever they live in the world.
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