PRESS RELEASE

7th Expanding Circles 2017 Annual Conference of the International Kidney Cancer Coalition (IKCC): Dr. Eric Jonasch and Dr. Lizzie Perdeaux elected to Board of Directors

The International Kidney Cancer Coalition (IKCC) completed its 7th Expanding Circles 2017 Annual Conference from April 6th – 8th, 2017 in Warsaw, Poland and announces Dr. Eric Jonasch and Dr. Lizzie Perdeaux as new members of the Board of Directors.

Warsaw/Poland, April 20, 2017

The International Kidney Cancer Coalition (IKCC) held its “7th Expanding Circles 2017 Annual Conference – the International Conference for Organisations Representing Patients with Kidney Cancer” from April 6th-8th, 2017 in Warsaw, Poland. During the Annual General Meeting of the Coalition, Dr. Eric Jonasch, an internationally recognized expert in kidney cancer based in the USA and Dr. Lizzie Perdeaux an expert in medical/health communications based in the UK, were elected to the IKCC Board of Directors.

Board Chair Dr. Rachel Giles commented that, “with this board election, we give our thanks to Prof. Michael Herbst from South Africa, who has served as a board member since 2012. Prof. Herbst remains a representative of his IKCC Affiliate Organisation CANSA, and we look forward to continued collaboration with him as we move forward.”

Following our strategic planning process, the Board of the International Kidney Cancer Coalition is delighted to strengthen our team with a globally known Medical Oncologist specialising in kidney cancer as well as an expert medical writer with extensive knowledge in kidney cancer.

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, Dr. Jonasch 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. “It is a true honour to join the IKCC,“ said Dr. Jonasch. “The IKCC enables patient organisations and physicians focused on kidney cancer from around the world to work together and improve awareness and treatment for this devastating disease. I look forward to helping the IKCC achieve their goals in the coming years.“

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.

‘In just 7 years the IKCC has achieved such a huge amount to improve the lives of kidney cancer patients all over the world,” says Lizzie Perdeaux. “The information they provide for patients about kidney cancer, treatment options and ongoing clinical trials is excellent. I am honoured to be a member of the Board and excited to contribute to the work of this fantastic organisation.’

The 7th International Kidney Cancer Coalition Conference for organisations representing kidney cancer patients was attended by over 50 kidney cancer advocates from 28 countries from six continents. Throughout the three-day meeting patient organisation leaders learned about latest developments in kidney cancer care, discussed active patient involvement and shared experiences with national healthcare policies. Delegates also participated in the launch of the first-ever World Kidney Cancer Awareness Day to take place on 22nd June 2017.

“These meetings always show that — no matter where we come from and what background we have – patient, relative, doctor, nurse – we all have the same objective: to improve the lives of kidney cancer patients wherever they live”, summarizes Dr. Rachel Giles, Board Chair and patient advocate from Dutch VHL Organisation and founding member. “I am very glad to welcome Dr. Jonasch and Dr. Perdeaux to our international Board of Directors and to strengthen our global coalition of organisations working collaboratively together to reduce the global burden of kidney cancer.”

About KIDNEY CANCER

Kidney cancer is diagnosed in over 300,000 people worldwide every year. It is the 12th most common cancer in the world, with approximately the same incidence as pancreatic cancer. Fewer than 1 in 20 people diagnosed with cancer have kidney cancer, meaning that it is quite a rare disease. When detected early, kidney cancer patients have very favourable survival outcomes. However, up to one third of kidney cancer patients are diagnosed at the advanced stage. There is no known cure for advanced kidney cancer although treatments can extend survival for many patients. Further research and new treatments are needed.

About the International Kidney Cancer Coalition (IKCC)

The International Kidney Cancer Coalition (IKCC), a registered foundation based in The Netherlands. The IKCC is an independent, democratic and patient-centred network comprising 28 Affiliate Organisations from around the world. The organisation was born from a very strong desire among various national patient groups to network, cooperate and share experiences.

For more information please view the IKCC website www.ikccv2.wpengine.com Search for us on Facebook as: IKCC
Follow us on Twitter: @IKCCORG

Media Contacts

Dr. Rachel Giles – English/Dutch

(Belangenvereniging Von Hippel-Lindau (VHL), The Netherlands) Staff, Internal Medicine
Dept. Nephrology and Hypertension
University Medical Center Utrecht

The Netherlands
Chair of the IKCC-Board r.giles@umcutrecht.nl

Deborah Maskens – English
(Kidney Cancer Canada)
Vice Chair of the IKCC Board debmaskens@kidneycancercanada.ca

Central Phone Number
IKCC UK (Mobile) +44 (0) 7973 777 202
www.ikccv2.wpengine.com
@IKCCorg