DiCE General Assembly & 8th Annual Masterclass 2023

CCIB, Barcelona, Spain, Jun 29, 2023, 9:00 am
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A huge thank you to all who participated in the

DiCE General Assembly & 8th Masterclass

held in Barcelona, 29 June – 1 July 2023

Your enthusiasm, dedication, and passion were truly inspiring. Special thanks to our excellent speakers for sharing their expertise and insights and our participants’ active engagement and enthusiasm. We witnessed an incredible exchange of knowledge and ideas throughout the event. Let’s continue collaborating, learning, and advocating for the digestive cancer community. We hope to see you all again next year!

Agenda

09.00 – 13.00 Registration
12.00 – 13.00 Buffet lunch
13.00 – 15.00 2023 DiCE Annual General Assembly All*
15.00 – 15.15 Break
15.15 – 17.15 Session 1: Update in Science
UEG White Book 2: Burden of Digestive Diseases & Priorities for Digestive Health Research
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Prof. Thomas Seufferlein,
University Clinic Ulm, Germany
Thomas Seufferlein

Prof. Thomas Seufferlein

Prof. Thomas Seufferlein, Professor of Gastroenterology at Ulm University, Germany.

Thomas studied medicine at the Technical University of Munich in 1989 and received his clinical training at the Free University of Berlin and Ulm University. His research has taken him to Imperial Cancer Research Fund, London and the Martin-Luther-University HalleWittenberg.

In 2012, he took on the role of Head of the Department of Gastroenterology, Endocrinology, Metabolism, and Nephrology at Ulm University, and since 2019 he is prodean for research at Ulm University Medical Faculty.

In addition to his general interest in Gastroenterology he has a particular interest in gastrointestinal oncology and is studying the molecular basis of GI cancers, in particular pancreatic cancer, and piloting the clinical use of novel treatments.

Professor Seufferlein is a member of the steering boards of the AIO colorectal and pancreatic cancer study groups, he coordinates the German National Guideline for pancreatic cancer and is involved in the ESMO guidelines for the diagnosis and treatment of pancreatic cancer. He is Editor-in-Chief of the German Journal of Gastroenterology and currently serves as President of the German Cancer Society.

Tailored Treatment for Digestive Cancers: The Role of Precision Oncology Dr. Silvia Marsoni,
IFOM, Italy
Silvia Marsoni

Dr. Silvia Marsoni

Prof. Silvia Marsoni, Principal Investigator (Precision Medicine Unit), IFOM-FIRC Institute of Molecular Oncology.

Silvia Marsoni has been active in cancer research for more than 30 years, establishing a record of accomplishments in the field of drug development and clinical trial methodology from the start of her career at the National Cancer Institute, USA. Pioneering the need to design treatments tailored to patients, well ahead of the precision medicine era.

Over the years, she has designed and conducted pivotal large-scale trials under the evidence-based medicine paradigm, returning to early drug development with the aspiration of developing more selective drugs.

During her time as Director of the SENDO Foundation, she led many early-phase trials for novel cytotoxic, targeted, and epigenetic drugs.

Since 2011, Silvia has designed and led the logistic research matrix (LMR), underpinning the Candiolo-Niguarda mCRC-committed group’s preclinical and clinical research efforts at IFOM.

Latest Updates from GI Cancer Congresses 2023 (Focus on Oesophageal & Gastric Cancers)
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Prof. Florian Lordick,
University Clinic Leipzig, Germany
Florian Lordick

Prof. Florian Lordick

Prof. Florian Lordick, Professor of Medicine at The University of Leipzig, Germany.

Florian Lordick is a Full Professor of Medicine at the University of Leipzig, Germany. He was appointed as Director of the University Cancer Center Leipzig in 2012. He also chairs the Department of Medicine II (oncology, gastroenterology, hepatology, pulmonology, and infectious diseases) at the Leipzig University Medical Center.

His scientific focus is on clinical and translational research in immune-oncology and targeted treatment of cancer, with a specific focus on gastrointestinal tract tumors.

He was Director of Education of the European Society for Medical Oncology (ESMO) 2020-2022. Currently, he serves as the deputy-editor-in-chief of the Journal of Cancer Research and Clinical Oncology (Springer), the official scientific journal of the German Cancer Society. He is associated editor of Gastric Cancer, the official scientific journal of IGCA and ESMO Open as well as member of the editorial board of Annals of Oncology, official scientific journal of ESMO.

What does this mean for Digestive Cancer Patients: A Summary of the Latest Findings (Focus on CRC, Pancreatic, and Liver Cancers) Prof. Eric Van Cutsem, DiCE Founder
University of Leuven (KUL) Belgium
Eric Van Cutsem

Prof. Eric Van Cutsem

Prof. Eric Van Cutsem, Professor of Gastroenterology at The University of Leuven (KUL), Belgium, Medical Director and Co-Founder of Digestive Cancers Europe.

Eric Van Cutsem is a Full professor and Division Head of Digestive Oncology at University of Leuven (KUL) and University Hospitals Gasthuisberg, Leuven, Belgium. In 2018 he received the doctor honoris causa from the Medical University of Warsaw, Poland. He is a Member of the Belgian Royal Academy of Medicine and president of the Belgian Foundation against Cancer.

His research focuses on the development of new treatment strategies for GI cancers, including drug development, and identification of molecular markers and diagnostic tools.

Eric co-founded ESMO GI/World Congress on Gastrointestinal Cancer, and is Chair of the meeting in Barcelona, Spain. He serves/served on the board or key committees for numerous European and International organisations.

As co-founder of DiCE and renowned Professor of Clinical Digestive Oncology, Eric is the organisation’s guiding voice on all medically relevant matters.

17.15 – 17.30 Discussion and Key Takeaways from Day 1
*Only DiCE Full Member Organisations are allowed to vote
08.10 – 08.55 Walk to the Conference center with StepApp!
09.00 – 09.15 Welcome to the Masterclass Day 2
09.15 – 11.15 Session 2: Staying Sustainable Through Fundraising and Working Together
An Overview of DiCE Grants
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Ghislaine Gerbier (DiCE)
Ghislaine Gerbier

Ghislaine Gerbier

Ghislaine Gerbier, Administrative Manager, DiCE

Ghislaine puts her years of knowledge gained in the non-profit sector, her skills and her calm into coordinating all administrative matters and ensuring that the DiCE office runs smoothly.

Her last positions were with ECL – the Association of European Cancer Leagues as Office Manager for 12 years and the International Federation for Spina Bifida and Hydrocephalus.

Policy Updates + National Events
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Marianna Vitaloni (DiCE)
Marianna Vitaloni

Marianna Vitaloni

Dr. Marianna Vitaloni, Medical & Scientific Project Manager, DiCE

Marianna is a patient advocate and, at DiCE, co-ordinates medical and scientific initiatives using her multidisciplinary experience to build the bridge between science and global health. She has been passionate about human health and wellbeing from the beginning of her professional career.

She laureated in Medical and Pharmaceutical Biotechnology at the University of Pavia (Italy) where she also obtained her PhD in Genetic and Human Pathology. During her research studies, a strong interest in public and global health drove her career towards international initiatives and projects aiming at improving human health.

Updates from Recipients of 2022 DiCE Grants
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Iva Kirac,
IGET Croatia
Iva Kirac

Iva Kirac

Iva Kirac is a specialist in surgical oncology and abdominal surgery who works at the University Hospital for Tumors, KBC Sestre Milosrdnica.

As a surgeon, Iva gained experience through education in Prague, Padua, Paris, New York, Boston and Tokyo, and her main interest was gastrointestinal malignancies, both in clinical and research work. In cooperation with the University of Edinburgh, she defended her doctoral thesis on the genetics of colon tumors at the Faculty of Medicine of the University of Zagreb. Following the trend of applied genetics, she was part of the team that founded the Genetic Oncology Clinic in Croatia - at the Tumor Clinic. Part of the unit is dedicated to the investigation of tumor heterogeneity, selective therapeutic response and blood biomarkers in colon and breast cancer.

Through these activities, she becomes a member of the COST action and the COGENT consortium, a collaborator in the SOCCS study; she is currently the author of 36 indexed publications (Nature Genetics, PloSone, Surgical Endoscopy), co-author of a book chapter and co-editor of a textbook on surgery. Part of the time he volunteers at the Center for Art and Medicine, a unique hospital unit whose goal is to humanize the hospital environment through interventions in the environment and support care through art therapies. From 2020, is co-founder of Institute for Gastroenterological Tumours, a patient advocacy group aimed at promoting accessibility of information, both about guidelines and quality of services in dialogue with policy makers.

Download presentation Eva Backman,
PALEMA Sweden
Eva Backman

Eva Backman

Eva Backman, Chairman of PALEMA, Sweden

Eva Backman is the current chairman of the Swedish Cancerföreningen (Cancer Association) PALEMA – an umbrella organization that covers upper gastrointestinal cancers. She is a 5-year locally advanced pancreatic cancer (LAPC) survivor and two times cancer caregiver having lost two husbands to cancer.

‘Norwegian by birth and Swedish by love’, she is a mother of two and a grandmother of three and her working life included two parallel jobs, a life-time occupation as a tour guide along with close to 30 years in the aviation industry – working herself up from the front line to strategic management in quality assurance, a role where strict adherence to safety meant saving lives.

It is with this same work attitude that Eva manages her own cancer journey, one that she describes as her “hardest job ever – having to be my own project leader in my own fight for survival. A daunting task in a totally unfamiliar landscape and with a language of its own”.

Wanting to be a voice of all those patients who are unable to speak up for themselves, she believes “We must and can do more – and we shall do it together”. Eva, is a member of the DiCE Patient Advisory Committee.

Download presentation Alina Comanescu,
Romanian Community Health Association, Romania
Alina Comanescu

Alina Comanescu

Alina Comanescu, Romanian Community Health Association

Alina brings her multinational experience in the public and private sectors to the DiCE Board, work that she has been involved in since 2009. Since 2013 she has been active in the cancer patient advocacy field on both national and European levels, this has been in her role as Founder of the Romanian Community Health Association ‘Asociația Sănătate pentru Comunitate’.

In this capacity she created a cancer patient advocacy strategy amid the complex political, cultural and regulatory landscape of Romania.

Download presentation Patricia Kramarova,
Say No to Cancer, Slovakia
Patricia Kramarova

Patricia Kramarova

Dr. Patricia Ramarova, Europacolon Slovakia

Patricia is a volunteer, responsible for international communication and international projects in the platform “No to Cancer Slovakia”, established by the nonprofit organization Europacolon Slovakia.

After finishing her PhD. In Public Health, Patricia started her career in the pharmaceutical industry as a Clinical Planning & Analytics Manager. Supporting the planning of clinical studies from various therapeutic areas. During this time, she observed many countries with lower access to innovative treatments, even suffering from a lack of clinical studies. Thanks to her experience with patient groups, Patricia believes that cooperation and continual effort can bring great progress in health care.

The Holy Grail of Fundraising
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Irmi Gallmeier,
Roche (Switzerland)
Irmi Gallmeier

Irmi Gallmeier

Irmi Gallmeier, Global Principal Patient Partnership Leader GI Cancers and Liver Diseases, Roche Pharma

Irmi has a strong and almost 25-year history of working for and with patient groups, starting in the late 1990s with a pharmaco-economic project for McKinsey Germany, involving cancer patient groups as part of her bachelor thesis in Marketing.

Coming from a pharmaceutical background, Irmi joined the patient-owned German tumour-biobank PATH (Patients’ Tumour Bank of Hope) in 2002 as Head of Project Management and a board member, driving PATH forward to be one of the world’s largest repositories of both breast cancer tissue and health records to support research on novel breast cancer treatments- in the early 2000s this was a unique example of a patient group’s contribution to both scientific research and real-world data.

In 2008, Irmi joined Roche Pharma as one of the first fully dedicated “Patient Care Managers” of the company. In her current role, she works with patient communities in Gastrointestinal Cancers and Liver Diseases, supporting and truly co-creating projects and material that really matter to patients and bringing in the patient’s perspective into Roche’s developments and solutions.

For Members From Members: Tips and Tricks to Secure Funding!
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Lisa Wilde,
Bowel Cancer, UK
Lisa Wilde

Lisa Wilde

Lisa Wilde, Director of Research and External Affairs, Bowel Cancer UK

Lisa is a scientist by training and since leaving the laboratory in 2002 has spent the last 21 years helping medical research charities with research strategy, science communications, marketing and communications, and policy and influencing.

She’s particularly interested in understanding and overcoming the unmet needs in cancer and was instrumental in developing the landmark critical research gaps publications for both Breast Cancer Now and Bowel Cancer UK.

For the past five years Lisa has been the Director of Research and External Affairs at Bowel Cancer UK. She has played a role in securing landmark policy change for people with bowel cancer, including lowering the bowel cancer screening age in England, and bringing Lynch syndrome surveillance coloscopies into the bowel cancer screening programme (the first initiative of its kind, globally). Lisa lives in London with her husband, Jon, and daughter, Ellis.

Download presentation Iga Rawicka,
EC Poland, Poland
Iga Rawicka

Iga Rawicka

Iga Rawicka, EuropaColon Poland

Iga Rawicka is an expert in the field of communication in healthcare with over 20 years of experience gained while working in international pharmaceutical and medical companies. For several years, she has been concentrating on her own activities implementing various projects, including educational campaigns in many therapeutic areas, supporting patients in improving their quality of life, and striving for better access to treatment in accordance with international standards.

The EuropaColon Polska Foundation was founded in 2017. Here, Iga is also an active member of the board. At EuropaColon she works for patients with gastrointestinal diseases, mainly colorectal, pancreatic, stomach, oesophagus and liver cancers. The Foundation is a very active DiCE Member, working in many areas of the healthcare system in order to change the reality of the Polish digestive cancer patient.

Download presentation Jenni Tamminen, COLORES, Finland
Jenni Tamminen

Jenni Tamminen

Dr. Jenni Tamminen-Sirkiä, COLORES, Finnland

Jenni’s expertise lies in both pharmacy and biochemistry. She began her career as a pharmacist and after completing further studies in biochemistry she began working on her doctoral thesis in cancer biology at the University of Helsinki.

The driving force in her career has been the need and will to help people who have problems with their health – especially people with cancer. She has worked for Colores, the Finnish Colorectal Cancer Association since 2017, and here she is fulfilled by helping those who have been affected by cancer.

Jenni serves as the Treasurer on the DiCE Board.

Workshop
11.15 – 11.30 Group Photo + Break
11.30 – 12.30 Session 3: Dietary Support for Digestive Cancer Patients
The Chef Without a Stomach Hans Rueffert,
USA
Hans Rueffert

Hans Rueffert

Hans Rueffert, Chef, Author, Speaker, Advocate and Survivor, USA

Hans is known by many titles, but his favorite title is perhaps “teacher.” A natural-born communicator, Hans has a rare ability to inspire others to push themselves to be their very best.

Hans was diagnosed with Gastric Cancer in 2005, never one to slow down, following his diagnosis and subsequent surgeries Hans has continued to share his talent in the kitchen with thousands. His endless knowledge and love of food coupled with his personal struggles with post-treatment life are an ongoing source of inspiration and interest.

Hans enriches the lives of those he meets and inspires the lives of those he reaches across multimedia channels. Hans recently co-launched a podcast called But I Digest (www.butidigestpodcast.com). Learn more about Hans at www.Hanscooks.com and check out the Gesundheit Kitchen, a series of nutritional videos Hans hosts for the Gastric Cancer Foundation at www.gastriccancer.org

Eating Through Cancer Treatment: A Platform For Patients
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Elena Roura,
Oncoalicia, Spain
Elena Roura

Elena Roura

Elena Roura, Alícia Foundation, Spain

Elena has a degree in Human Nutrition and Dietetics, a degree in Science and Food Technology, a postgraduate degree in Clinical Nutrition and a Ph.D. in the Department of Nutrition and Food Science (University of Barcelona).

She's done research in nutrition and food bromatology with a special interest in natural food antioxidants like polyphenols. She has worked as a dietitian at the Hospital del Mar and the Red Cross Hospital in Barcelona. She is also experienced as technique in health and nutrition for the Ministry of Health and Welfare of Andorra.

Since 2004 she has worked at Alícia Foundation as Scientific Director.

12.30 – 13.30 Lunch
13.30 – 15.15 Session 4: A Brave New Digital World
Health Data 101
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Gözde Briggs,
Data Saves Lives, European Patients Forum (EPF), Belgium
Gözde Briggs

Gözde Briggs

Gözde Briggs, Data Saves Lives, European Patients Forum

Gözde’s role as a Project Manager at EPF (European Patients’ Forum) involves overseeing the “Data Saves Lives” initiative and managing various aspects of digital health and health data-related EU-funded projects.

Co-Creating Patient Support Tools: Introducing the Oesophageal and Gastric Cancer Patient App
Mitchell Silva,
Patient Ph.D., Belgium
Mitchell Silva

Mitchell Silva

Dr. Mitchell Silva, Patient Centrics

Mitchell is CEO and one of the co-founders of Esperit/Patient Centrics. Mitchell obtained a master degree in Bio-Engineering and a PhD at the University of Leuven, Belgium.

He is also founder of Health2.0 Chapter Belgium, an organisation promoting innovation in the digital health sector.

Mitchell is a patient advocate for rare diseases.

Workshop
15.15 – 15.30 Break
15.30 – 17.30 Session 5: StepApp Moving Forward
StepApp: What’s Next? Ruel Jacob and Luca Arfini (DiCE)
Ruel Jacob

Ruel Jacob

Ruel Jacob, Communications Manager, DiCE

Ruel is an experienced communication practitioner with a demonstrated history of working in several European associations in Brussels. Skilled in communication management, social media strategy and customer satisfaction, Ruel is a marketing professional with a Master of Science in Communication Studies focused on New Media and Society in Europe from Vrije Universiteit Brussel.

Luca Arfini

Luca Arfini

Luca Arfini, Communications & Membership Coordinator, DiCE

Luca is a communications specialist from Italy and now residing in Amsterdam. His expertise combines European studies and scientific communication background with a track record in helping orgnisations with their branding efforts in both the private and public sectors.

He excels in crafting impactful campaigns, producing compelling content, and executing standout events. His passions and knowledge encompass a broad spectrum, from European affairs and human rights to health, and sustainable development.

Workshop
19.20 – 20.00 Scenic walk to dinner with the StepApp!
20.00 – 22.30 Official Dinner: Salamanca Restaurant
08.10 – 08.55 Walk to the Conference center with the StepApp!
09.00 – 09.15 Welcome to the Masterclass Day 3
09.15 – 11.15 Session 6: A Brighter Future Through Clinical Trials
Patient Co-Creation in Clinical Trials
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Marianna Vitaloni,
Ph.D., DiCE
Marianna Vitaloni

Marianna Vitaloni

Dr. Marianna Vitaloni, Medical & Scientific Project Manager, DiCE

Marianna is a patient advocate and, at DiCE, co-ordinates medical and scientific initiatives using her multidisciplinary experience to build the bridge between science and global health. She has been passionate about human health and wellbeing from the beginning of her professional career.

She laureated in Medical and Pharmaceutical Biotechnology at the University of Pavia (Italy) where she also obtained her PhD in Genetic and Human Pathology. During her research studies, a strong interest in public and global health drove her career towards international initiatives and projects aiming at improving human health.

Patient Engagement at EMA
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Maria Mavris,
Ph.D. European Medicines Agency (EMA), Belgium
Maria Mavris

Maria Mavris

Dr. Maria Mavris, European Medicines Agency (EMA)

Maria Mavris first joined EMA as a seconded expert from a patient organisation in 2014 and then as a staff member from 2017. As part of the Public and Stakeholder Engagement department of EMA, her work focuses on involving patients all along the regulatory lifecycle and supporting them in their involvement as members of EMA’s scientific committees, as representatives of their organisations or as individuals with experience of living with a disease and its treatment.

A Perspective from the Industry Jawad Hamad,
MD Oncology Medical Director, Merck, United Arab Emirates
Jawad Hamad

Jawad Hamad

Dr. Jawad Hamad, Merck

Jawad is a passionate pharmaceutical physician. He is eager to help patients fight their illnesses across the globe, be their advocate and the loud voice for the right treatment to the right patient at the right time.

Jawad is part of the Global Oncology Medical Unit and leading CRC and GI Oncology at Merck.

An Easier Path to Clinical Trial Discovery
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Mitchell Silva,
Patient Ph.D., Belgium
Mitchell Silva

Mitchell Silva

Dr. Mitchell Silva, Patient Centrics

Mitchell is CEO and one of the co-founders of Esperit/Patient Centrics. Mitchell obtained a master degree in Bio-Engineering and a PhD at the University of Leuven, Belgium.

He is also founder of Health2.0 Chapter Belgium, an organisation promoting innovation in the digital health sector.

Mitchell is a patient advocate for rare diseases.

Patient & Carer Perspectives Harry Verbunt,
The Netherlands
Harry Verbunt

Harry Verbunt

Harry Verbunt, The Netherlands

Read his story

Download presentation Teodora Stefan,
Romania
Teodora Stefan

Teodora Stefan

Teodora Stefan, Romania

Teodora is here to represent her boyfriend, George.
He has shown incredible bravery, constantly seeking solutions everywhere, even when there were none. She is extremely proud of him for traveling to the United States for a clinical trial and for the way he handled the bad hand he was dealt.

She was alongside him ever since he got diagnosed with advanced gastric cancer at only 23 years old.

Adrian Cârlan
Romania
Adrian Cârlan

Adrian Cârlan

Andrian Cârlan, Romania

Adrian “Andi” is a 39-year-old Romanian, husband, and father to two wonderful girls. He’s an active volunteer, civic activist, #bloodfluencer, donor, and occasional fundraiser, involved in civic social movements, blood donations, social cases, and in 2022 in the Ukrainian refugees’ crisis in Romania.

In May 2019 at 36 years old, he received the diagnosis of Stage III Colon Cancer, which was treated with surgery and chemotherapy. Two years later, in July 2021, it came back in the form of a liver metastasis that was surgically removed in September. Unfortunately, in February 2023 he found out that the cancer was back again, he underwent surgery in April and is joining the DiCE Masterclass following his recovery.

Since 2020, he has been advocating for cancer patients in Romania, helping them cope with cancer and understand their disease and treatment options. He also works to share positive ways of dealing with the new life that cancer brings.

Andi writes a blog (in Romanian) that documents his journey with cancer and other social, medical, and educational themes.

By is a member of the DiCE Patient Advisory Committee, where is works to spread his message and help others at across Europe.

Download presentation Alina Comanescu,
Romanian Community Health Association, Romania
Alina Comanescu

Alina Comanescu

Alina Comanescu, Romanian Community Health Association

Alina brings her multinational experience in the public and private sectors to the DiCE Board, work that she has been involved in since 2009. Since 2013 she has been active in the cancer patient advocacy field on both national and European levels, this has been in her role as Founder of the Romanian Community Health Association ‘Asociația Sănătate pentru Comunitate’.

In this capacity she created a cancer patient advocacy strategy amid the complex political, cultural and regulatory landscape of Romania.

11.15 – 11.30 Future Events + Launch of DiCE 5-year Anniversary
11.30 – 11.45 Close of the 8th Masterclass

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