Tanya Knott
Founder SJK Foundation
IRELAND
Warnyta Minnaard
Co-founder Missie Tumor Onbekend
NETHERLANDS
Dr Natalie Cook
Clinical Snr Lecturer Exp Cancer Med
The Christie NHS Foundation Trust
UK
Prof. Alwin Kramer
Head of division molecular hematology/oncology
German Cancer Research Center Heidelberg
GERMANY
IRELAND & UK
Tanya Knott
Founder SJK Foundation
IRELAND
Dr Natalie Cook
Clinical Snr Lecturer Exp Cancer Med
The Christie NHS Foundation Trust
UK
Alison Taylo
Cancer of Unknown Primary (CUP)
Nurse Consultant at The Clatterbridge Cancer Centre
UK
Niamh Peters
IRELAND
Sonali Dasgupta
UK
Kai-Keen Shiu
UK
EUROPE
Warnyta Minnaard
Co-founder Missie Tumor Onbekend
NETHERLANDS
Prof. Alwin Kramer
Head of division molecular hematology/oncology
German Cancer Research Center Heidelberg
GERMANY
Petur Snaebjornsson
Professor of pathology with special interest in cancer of unknown primary (CUP)
NETHERLANDS
Leon van Kempen
BELGIUM
Hilde Nienhuis
NETHERLANDS
Martin Zoche
SWITZERLAND
Anna Patrikidou
FRANCE
Manel Esteller
SPAIN
USA
Kanwal Raghav
USA
Ryan Huey
USA
Hannah Robinson
USA
AUSTRALIA & ASIA
A/Prof. Richard Tothill
Associate Professor at University of Melbourne
AUSTRALIA
Prof. Linda Mileshkin
Deputy director Medical Oncology
Peter MacCallum Cancer Centre, Victoria
AUSTRALIA
Ishida Kyoko
JAPAN
Xichun Hu Qinghua Xu
CHINA
IRELAND & UK
Tanya Knott
Founder SJK Foundation
IRELAND
Dr Natalie Cook
Clinical Snr Lecturer Exp Cancer Med
The Christie NHS Foundation Trust
UK
Alison Taylo
Cancer of Unknown Primary (CUP)
Nurse Consultant at The Clatterbridge Cancer Centre
UK
Kai-Keen Shiu
UK
Sonali Dasgupta
UK
Niamh Peters
IRELAND
EUROPE
Warnyta Minnaard
Co-founder Missie Tumor Onbekend
NETHERLANDS
Prof. Alwin Kramer
Head of division molecular hematology/oncology
German Cancer Research Center Heidelberg
GERMANY
Petur Snaebjornsson
Professor of pathology with special interest in cancer of unknown primary (CUP)
NETHERLANDS
Leon van Kempen
BELGIUM
Hilde Nienhuis
NETHERLANDS
Martin Zoche
SWITZERLAND
Anna Patrikidou
FRANCE
Manel Esteller
SPAIN
USA
Kanwal Raghav
USA
Ryan Huey
USA
Hannah Robinson
USA
AUSTRALIA & ASIA
A/Prof. Richard Tothill
Associate Professor at University of Melbourne
AUSTRALIA
Prof. Linda Mileshkin
Deputy director Medical Oncology
Peter MacCallum Cancer Centre, Victoria
AUSTRALIA
Ishida Kyoko
JAPAN
Xichun Hu Qinghua Xu
CHINA
About WCA
After having organized two World CUP Awareness Weeks in 2021 and 2022 with awareness events and informative webinars for patients and clinicians, reaching 9 million accounts in 170 countries, SJK Foundation (Ireland) and Missie Tumor Onbekend (the Netherlands) have joined forces to launch the first international Cancer of Unknown Primary (CUP) patient advocacy alliance.
It is our objective to build an international alliance of all those patient advocates that are focused on improving diagnostics, treatments and care journeys for all patients affected by CUP. Together we are advocates for the implementation of, awareness of and accessibility of precision oncology. As innovations in oncology and the ease of patient interaction is truly happening on a global scale, it is now more important than ever, to share knowledge and learn from examples in different countries and across health systems.
To date we have been able to unite patient advocates not only from Ireland and the Netherlands, but also including the UK, the US and Belgium. The World CUP Alliance will pursue three main activities.
Raise awareness and provide information
& peer support to patients
Support the development of universal patient information folders in different languages on the basis of best practices and tailored to national settings
Continue to organize (bi)-yearly World CUP Awareness Weeks to increase awareness and focus attention on unmet needs
Support the organization of “Into the unknown” awareness and fundraising events in different countries
Raise awareness and provide information
& peer support to patients
Support the development of universal patient information folders in different languages on the basis of best practices and tailored to national settings
Continue to organize (bi)-yearly World CUP Awareness Weeks to increase awareness and focus attention on unmet needs
Support the organization of “Into the unknown” awareness and fundraising events in different countries
Advocating for the best CUP patient journey
Advocate for access to precision diagnostics & precision therapies, for example via patient journey mapping and sharing of relevant patient stories
Advocate for a ‘two-step approach’ in clinical care: the best diagnostics whilst at the same time offering best supportive care based on patient needs and preferences
Learn from and unite different national & international guidelines
Advocating for the best CUP patient journey
Advocate for access to precision diagnostics & precision therapies, for example via patient journey mapping and sharing of relevant patient stories
Advocate for a ‘two-step approach’ in clinical care: the best diagnostics whilst at the same time offering best supportive care based on patient needs and preferences
Learn from and unite different national & international guidelines
Co-establish & support international
research partnerships
Disseminate trial information and share best practices with patients and healthcare professionals
Provide an up-to-date overview of ongoing CUP clinical trials
Actively collaborate with research groups interested in multi-country CUP trials
Co-establish & support international
research partnerships
Disseminate trial information and share best practices with patients and healthcare professionals
Provide an up-to-date overview of ongoing CUP clinical trials
Actively collaborate with research groups interested in multi-country CUP trials
Tanya Knott
Founder
Steering Committee
Tanya Knott has worked in the healthcare industry for over 25 years. A King’s College London and Trinity College Dublin graduate, Tanya has worked as a registered general nurse specialising in cardiothoracic, intensive care and emergency nursing. Tanya also has years of experience in market access in the pharmaceutical industry. When Sarah was diagnosed with Cancer of Unknown Primary (2015), Tanya realised there was a huge gap in knowledge and research in this disease area and set up the foundation with the aim of promoting improved awareness, research and education into Cancer of Unknown Primary (CUP). Tanya is also the co-founder of the WCA, World CUP Alliance (Cancer of Unknown Primary) www.worldcupalliance.org
Working together with global experts, patients, health care professionals, researchers and industry to promote education, awareness and research into CUP. The WCA are proud members of WECAN (Working European Cancer Advocacy Network) Tanya has written published articles and a white paper on the ‘Unmet needs of patients with Cancer of Unknown Primary” and has presented at many international conferences. Tanya is a former board member of ‘From Testing to Targeted Treatments’. FT3 is a global initiative to help ensure access to precision medicine for all patients who need it www.fromtestingtotargetedtreatments.org; she is also a member of the PPI and the national molecular tumour board steering committee at Cancer Trials Ireland.
Warnyta Minnaard
Founder
Steering Committee
Warnyta Minnaard (1989) is one of the founders of ‘Missie Tumor Onbekend’, the Dutch advocacy organisation dedicated to improving care & survival for Cancer of Unknown Primary (CUP) patients. After her partner Hederik passed away in early 2019 amidst an ongoing diagnostic trajectory with leptomenigial metastases from a CUP; Warnyta started on a mission to change the situation for future patients. Together with another grieving family of a young CUP patient, they started the advocacy organisation. It’s her personal mission to expedite access to better personalised (molecular) diagnostics, improve knowledge and awareness of CUP, and enhance the care pathways and support opportunities for patients and their families. One of the biggest milestones to date has been Missie Tumor Onbekend pivotal role in obtaining Dutch Parliamentary approval in 2021 so that Whole Genome Sequencing became part of the insured diagnostic routine work-up for CUP patients in the Netherlands. Ever since 8 specialised CUP clinics have opened across the country.
Dr Natalie Cook
Steering Committee
Dr Natalie Cook is a Senior Clinical Lecturer in Experimental Cancer Medicine at The Christie NHS Foundation Trust/Division of Cancer Sciences, University of Manchester. She is also the clinical lead for Manchester Experimental Cancer Medicine Centre. She previously trained in Medical Oncology in Cambridge, UK, where she completed a PhD, funded by a CRUK Clinical Training fellowship. In 2012, she was awarded the Rothwell Jackson Postgraduate Travelling Fellowship and travelled to Canada to undertake a 2 year drug development research fellowship, based at the University of Toronto and Princess Margaret Cancer Centre. In her current position she is co-investigator on a portfolio of over 50 early phase clinical trials, and is a Chief or Principal Investigator on over 20 trials. She has research interests in precision medicine, colorectal cancer and carcinoma of unknown primary site.
Prof. Dr. med. Alwin Krämer
Steering Committee
Prof. Dr. med. Alwin Krämer
Clinical Cooperation Unit Molecular Hematology/Oncology
German Cancer Research Center (DKFZ) and
Dept. of Internal Medicine V, University of Heidelberg
Born in Germany, Alwin began his career studying Medicine at the University of Mainz, Germany and Bern, Switzerland. His training took him international with a residency at University of Heidelberg, a postdoctoral fellow in Wisconsin, USA and a Heisenburg fellow at the Danish Cancer Society Research Center, Copenhagen, Denmark.
From 2005, Alwin has dedicated his time and research to Hematology, which has led him to be both the Co-chairman of the Steering Committee „CUP-Syndrome” of the Arbeitsgemeinschaft Internistische Onkologie (AIO) within the German Cancer Society (DKG) and since 2022 the Chairman of the ESMO CUP-Practice Guidelines Committee.
During his career, Alwin has been awarded the Heisenberg Stipend of the German Research Society (DFG), Vincenz-Czerny Award of the Deutsche Gesellschaft für Hämatologie und Onkologie (DGHO) and in 2010 the Science Award of the Arbeitsgemeinschaft Internistische Onkologie (AIO) within the German Cancer Society (DKG).
Sara Santarelli
Brand & Comms
Sara Santarelli is an Italian architect and visual designer, living in Ireland. She’s the founder and head designer of SNDE VISUAL Design & Communication. Expert in branding and communication strategy, Sara has been working alongside Tanya since the set up of the Sarah Jennifer Knott Foundation in 2016. Leading the comms team (publications, web design, social media), Sara has been involved in various projects with the foundation ever since, including World CUP Awareness Week 2021 & 2022. She’s been part of the core team of the World CUP Alliance (Cancer of Unknown Primary) since its foundation and recently graduated from the Wecan Academy (Working European Cancer Advocacy Network).
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