IKCC Global Kidney Cancer Summit 2025

For further information on the conference venue, reimbursement rules etc please refer to the Fact Sheet 2025 Conference

Please find the conference agenda here: Conference Agenda

Recordings of the presentations are now available – please click on the green headlines to view recording:

DAY 1 – Friday 4th April 2025

START OF THE CONFERENCE 

Welcome to the 2025 Global Kidney Cancer Summit

Prof. Michael Jewett, Chair IKCC (CA)
Juan Carlos Julian Mauro, Managing Director ALCER (ES)
Aránzazu González del Alba, Spanish Oncology Genito Urinary Group (ES)
Moderator: Prof. Michael Jewett (CA)

Patient Organisation Meet and Greet

Moderators: Claudia Ungarelli (IT) & Flávia Kavalec (BR)

Where Patients Belong in Decision Making in 2025

Neil Bertelsen (DE)
Moderator: Margie Hickey (US)

Evidenced Based Advocacy: Part 1 Uncovering the Evidence 

The Value of Evidence Based Advocacy: Alfonso Aguaron, Patvocates GmbH (DE)
Planning the Survey: Prof. Miguel Ruiz, Universidad Autónoma de Madrid (ES)
Preparing the Survey Questions: Clare Lerway, Picker Institute (UK)
Maximising Participation: Claudia Ungarelli, Anture (IT) & Jyoti Patil Shah, V Care Foundation (IN)
Moderator: Karin Kastrati (DE)

DAY 2 – Saturday 5th April 2025

Evidenced Based Advocacy: Part 2 Disseminating the Evidence 

Evidence Drives Organisational Strategy: Natacha Bolaños, Lymphoma Coalition (ES)
Learnings from the 2025 IKCC Global Survey Report: Deb Maskens (CA)
How to Communicate Data Effectively: Diego Villalón, Fundación Más Que Ideas (ES)
Communicating to Health Care Professionals: Dr Eric Jonasch (US)
Moderator: Steve Pointon (UK)

The Cecile and Ken Youner IKCC Scholarship

Enhancing Quality of Life and Symptom Management in Metastatic Renal Cell Carcinoma Through a Web-Based eHealth Application: Dr Hatice Bölek (TR)
Moderator: Dr Eric Jonasch (US)

Clinical Hot Topics 

Update on IO:  Dr Cristina Suarez (ES)
Management of Primary Renal Mass: Prof. Axel Bex (NL/UK)
Shared Decision-Making in Adjuvant Therapy: Dr Eric Jonasch (US)
Moderator: Dr Eric Jonasch (US)

Evidenced Based Advocacy: Part 3 Influencing Policy Change

Building Connections and Networks of Support: Carmen Auste, Cancer Coalition Philippines (PH) Virtual
Personalizing the Message: Laura Esfeller, Chromophobe and Oncocytic Tumor Alliance (US) Virtual
Creating Change – the Kidney Cancer UK Experience: Malcolm Packer, KCUK (UK)
Creating Change – The Spanish Palliative Care Initiative: Ana Fernández, Asociación Española Contra el Cáncer (ES)
Moderators: Flávia Kavalec (BR) & Margie Hickey (US)

DAY 3 – Sunday 6th April 2025

IKCC Annual General Meeting (Open to all Attendees)

Prof. Michael Jewett, Chair IKCC (CA)
Olivier Exertier, Executive Director, IKCC (FR) 

Keeping the Spark Alive 

Ensuring the Future of your Organisation: Alfonso Aguaron, Patvocates GmbH (DE)
Moderator: Claudia Ungarelli (IT)

Addressing Unmet Needs of Kidney Cancer Patients

The Asian Perspective: Dr. Munisamy, The National Cancer Society Malaysia (MY)
Hunting for a Cause: DISCERN, EU Project: Aida Ferreiro, IARC (FR)
Seeking Treatment Options in Spain: Juan Carlos Julian Mauro, ALCER (ES)
Supporting the Unmet Needs of Kidney Cancer Patients: Deb Maskens (CA)
Moderators: Jyoti Patil Shah (IN) & Margie Hickey (US)

End of Conference Remarks

Prof. Michael Jewett (CA), and Olivier Exertier (FR)

Welcome to the Global Kidney Cancer Summit 2025 – the International Conference for Organisations Representing Patients with Kidney Cancer. We are thrilled the global kidney cancer community is coming together in Madrid, Spain to learn, share and connect!

The theme of this year’s Summit is Building Evidenced-Based Advocacy Skills. This reflects the evolution of patient organisations from being primarily focused on patient education to taking on the role of advocate.

Patient advocacy is needed across the health system. At an individual level, we work to empower patients to have their voice heard by their health team. At a systems level, we advocate for the experiences and insights of kidney cancer patients are a part of the discussions that shape kidney cancer treatment, care and policy.

We are excited to present an interactive event with internationally renowned patient advocacy leaders as guest presenters from within the world of kidney cancer and beyond. Throughout the three days we will explore ways to generate and disseminate the evidence needed to influence policy change. Through a combination of presentations and roundtable discussions, we anticipate an engaging and productive Summit.

Following the Summit, please check back here again for recordings of the presentations. They will be available for IKCC Partner Organisations to reference, as well as share with members of their teams, and continue capacity building in evidence-based advocacy across the Coalition.

Thank you for being here with us. Together we are stronger.

~ The Conference Steering Committee 2025

In 2018, IKCC established The Cecile and Ken Youner IKCC Scholarship, an annual student scholarship to honour the IKCC Emeritus Founding Member, Dr Ken Youner. Its goal is to engage with medical students in the hope they will peruse a career in the field of kidney cancer and become leaders in the community.

We are pleased to announce this year’s scholarship has been awarded to Dr Hatice Bölek of Turkiye. As part of the scholarship, Dr Bölek will present her work at the 2025 IKCC Global Kidney Cancer Summit in Madrid, Spain.

Dr Bölek is an internal medicine specialist and medical oncology fellow, having earned her medical degree from Hacettepe University in 2015 and completed her internal medicine residency at the same institution in 2020. Following two years of consulting as an internal medicine specialist, Dr Bölek commenced her medical oncology fellowship at the Ankara University Faculty of Medicine in September 2022. In 2024, she was honoured with the International Development and Education Award (IDEA) by Conquer Cancer, American Society of Clinical Oncology (ASCO). Her primary research interests in genitourinary cancer include biomarkers, prognostic factors and patient-reported outcomes. She will present her current research: Enhancing Quality of Life and Symptom Management in Metastatic Renal Cell Carcinoma Through a Web-Based eHealth Application.

Congratulations Dr Bölek!

The Conference Steering Committee planned the Global Kidney Cancer Summit 2025 with the following objectives in mind:

• To build new skills and learn from one another in key areas, with a strong focus on evidence-based advocacy
• To update the patient advocate community with new developments in the rapidly-changing field of kidney cancer treatments and care
• To highlight the patient perspective – both personal and organisational – in every session across the programme
• To build and strengthen relationships across the global kidney cancer network, and to stimulate and foster relationships, partnerships, learning opportunities and idea generation

To maximize your experience at the 2025 Global Kidney Cancer Summit, we encourage you to think about your goals, your objectives and what you want to accomplish during this time.

• What are you hoping to learn, personally and for your organisation?
• What connections do you want to make?
• What does a successful conference look like to you?

Madrid is the capital city of Spain, located in the centre of this southern European country. The city proper is home to more than 3 million people, but including the 40 municipalities, the metropolitan area has a total population of approximately 6.5 million, the third largest urban centre in the European Union behind London and Paris.

Madrid has a rich history with the first historical record of the city dating back to 865. Visitors to the city will enjoy many historical sites – including the Palace Real, one of the largest palaces in the world and Basílica de San Francisco El Grande, one of Madrid’s ‘favourite’ churches.

In addition to being the country’s economic hub, Madrid is known as a lively urban centre with a rich cultural scene. It is home to the world’s oldest restaurant, Casa Botín, and one of the world’s most famous bullfighting rings, La Plaza de Toros de Las Ventas.

Sources: Lonely Planet, Wikipedia.org and WorldPopulationReview.com

IKCC thanks all the organisations and individuals who contributed to the planning and execution of the Global Kidney Cancer Summit 2025 in Madrid, Spain

Special thanks to the Conference Steering Committee (members listed below) who developed the program, recruited speakers and managed conference logistics. It is through their hard work that the kidney cancer patient community is together to learn, share and grow.

Sincere appreciation to the global network of Partner Organisations who share their insights and experience. This commitment helps build capacity across the kidney cancer patient network and ultimately helps improve the lives of patients worldwide.

This Global Kidney Cancer Summit has been funded with sponsorship from the following companies in full compliance with the Code of Conduct of the International Kidney Cancer Coalition:

2025 Conference Steering Committee Members:

Margie Hickey, IKCC Board Member (United States), Chair of the Conference Committee
Flávia Kavalec, Instituto Oncoguia, (Brazil)
Elżbieta Majewska, Polish Amazons Social Movement (Poland)
Juan Carlos Julian Mauro, ALCER (Spain)
Jyoti Patil Shah, V-Care Foundation (India)
Claudia Ungarelli, Anture (Italy)

Please help us improve the IKCC Global Kidney Cancer Summit by filling in the evaluation forms.

Day 1 (Friday): Evaluation form Friday
Day 2 (Saturday): Evaluation form Saturday
Day 3 (Sunday): Evaluation form Sunday