Our 7th Masterclass Series was held in Barcelona, Thursday 30 June – 2 July ’22
It was amazing to meet you all in person for our 7th Annual Masterclass that ran parallel to the ESMO World Congress on Gastrointestinal Cancer 29 June – 2 July, 2022. This was together with our Annual General Assembly on 30 June ’22, which this year included the election of a new Board. Materials for further use are available below and please see this album for a look into the highlights.
| Thursday 30 June 2022 | ||
|---|---|---|
| 09.00 – 13.00 | Registration | All |
| 12.00 – 13.00 | Buffet lunch | All |
| 13.00 – 15.00 | 2022 DiCE Annual General Assembly | All* |
| 15.00 – 15.15 | Coffee break | All |
| 15.15 – 17.15 | Session 1: Update in Science | All Moderated by Marianna Vitaloni & Zorana Maravic, DiCE |
| Update in Digestive Cancers | Prof. Eric Van Cutsem, DiCE Founder, UZ Leuven, Belgium | |
| Digestive Cancers – Getting Personal See the slides | Dr. Claudia Cardone, IRCCS Istituto Nazionale Tumori Fondazione G Pascale, Italy | |
| What We Need to Know about Cholangiocarcinoma See the slides | Dr. Teresa Macarulla, Vall d´Hebrón University Hospital and Vall d´Hebrón Institute of Oncology (VHIO), Spain | |
| Microbiota – The Role in Cancer Development and Progression See the slides | Toni Gabaldón, IRB, Spain | |
| 17.15 – 17.30 | Conclusions | Zorana Maravic, DiCE |
| *Voting rights apply to Full Member Organisations only | ||
| Friday 1 July 2022 | ||
|---|---|---|
| 09.00 – 10.15 | Session 2: Sharing Best Practices and Learnings | All Moderated by: Natasha Münch, DiCE |
| FAPA | Katlijn Sanctorum, Belgium | |
| Colores See the slides | Jenni Tamminen, Finland | |
| EuropaColon Italia See the slides | Cristina Vacca, Italy | |
| PALEMA | Eva Backman, Sweden | |
| Dance with Cancer | Fatma Figen AR, Turkey | |
| POLA See the slides | Neringa Čiakiene, Lithuania | |
| Stichting Darmkanker NL See the slides | Vincent de Jong, Netherlands | |
| EuropaColon España See the slides | Luis Miguel de la Fuente, Spain | |
| 10.15 – 10.30 | Coffee break | All |
| 10.30 – 12.30 | Session 3: The Value of Meaningful Patient Engagement in Drug Development Process | All Moderated by: Nicholas Brooke, PFMD, Belgium |
| Codice Viola | Piero Rivizzigno, Italy | |
| 12.30 – 13.30 | Lunch | All |
| 13.20 – 15.30 | Session 4: Improving Practices with Policy Activities | All Moderated by: Aleksandra Kaczmarek, DiCE |
| EuropaColon Slovakia | Patricia Kramarova, Slovakia | |
| Bowel Cancer UK | Lisa Wilde, UK | |
| Colores | Jenni Tamminen, Finland | |
| Codice Viola | Piero Rivizzigno, Italy | |
| PALEMA | Eva Backman, Sweden | |
| 15.30 – 17.30 | Session 5: Widening our Reach with Effective Public Awareness Campaigns See the slides | All Moderated by: Catie Young, DiCE |
| EuropaColon Italia | Cristina Vacca, Italy | |
| SAID NGO | Dr. Ale Jose Hejase, Lebanon | |
| EuropaColon Slovakia | Patricia Kramarova, Italy | |
| 20.00 – 22.30 | Official Dinner: La Fonda del Port Olympic | All |
| Saturday 2 July 2022 | ||
|---|---|---|
| 09.15 – 11.15 | Session 6: What can the European Health Data Space (EHDS) do for cancer patients? | Moderated by: Petra Wilson, FTI Consulting, Belgium & Lisa Rice, Barcelona |
| 11.15 – 11.30 | Close of the 7th Masterclass | Zorana Maravic, DiCE |
For past Masterclasses and their materials – videos and presentations – please go to:
Speakers Bios
Claudia Cardone, MD PhD, completed the training in Medical Oncology (2018) and the PhD programme in translational medicine (2022) at Università degli Studi della Campania “Luigi Vanvitelli”, in Napoli. After a fellowship at the Comprehensive Cancer Center in Vienna, she was a fellow at the Clinical Trial Unit at the NCI Fondazione IRCCS Pascale, involved in the Phase I Unit. In 2020 she has been appointed as Consultant in the GI Oncology Unit at NCI Fondazione IRCCS Pascale.
She is currently involved in clinical and translational research, with a particular interest in colorectal cancer. Dr. Cardone is a member of AIOM, ASCO, and ESMO, where she serves as a Committee member of the ESMO Young Oncologists Committee and the ESMO Social Media Working group.
Teresa Macarulla, MD, PhD, received her medical degree from the Universitat Autònoma de Barcelona in Barcelona, Spain. Afterwards, she completed her specialist training in medical oncology and has had appointments in Barcelona.
Dr Macarulla is currently a physician in the Medical Oncology Department at the Vall d’Hebron University Hospital in Barcelona, Spain. Dr Macarulla is also the head of the GI Cancer Program Unit since April 2017. She is working in the gastrointestinal tumors team. She is involved in translational research and pharmacodynamic phase I studies with molecular targeted therapies and related translational research, with a special focus on EGFR inhibitors. She is also involved in phase II and III studies with new chemotherapy agents in gastrointestinal tumors, with special interest in hepatobiliopancreatic tumors.
Dr Macarulla is the author of numerous publications, many focusing on hepatobiliopancreatic tumors and new drugs, and she has authored communications at different conferences. She actively participates in the development of national and international clinical investigations, especially in relation to drugs directed against molecular targets, as well as clinical investigations for new chemotherapy agents. Dr Macarulla is also an ad hoc reviewer for various oncology journals.
In addition, Dr Macarulla is an active member of the Spanish Society of Medical Oncology, European Society for Medical Oncology, and American Society of Clinical Oncology.
Toni Gabaldón is ICREA Research Professor jointly affiliated to the Institute for Research in Biomedicine (IRB) and the Barcelona Supercomputing Centre (BSC), where he leads the Comparative Genomics group (www.cgenomics.org). His research focuses on understanding underlying genomic bases of organismal adaptations, particularly in microbial organisms. One of the research lines in his group addresses the complex relationships between the human microbiome and human health, including the role that microbial communities in the oral or gut cavity may play in the onset and progression of systemic diseases and cancer.
Dr. Gabaldón has published over 220 publications and his work has received over 27000 citations (h-index=80). Dr. Gabaldón has received honors and awards such as the EMBO membership, the ERC starting and consolidator grants, and the Margaret Dayhoff award and is considered a highly cited researcher by clarivate analytics.
MY BACKGROUND :
Patient representative for my association (FAPA) who supports patients with rare digestive tumor syndromes Studies
• Communication studies at Vrije Universiteit Brussel + Phd researcher
• Graduate end of live care
MY STORY IN SHORT :
I live in Brussels with my partner and I am a mother of two (young men)
WHO I AM :
Communication between people, between organizations and with the general public, are my passions. I have built up a broad
experience in the media and afterwards in the non profit sector.
I believe in the power and capacities of people and I like to focus on positive points.
I want to continue to empower patients and care givers through education, information and support.
MY EXPERTISE :
20 years of experience in psychosocial care in the context of support of victims, carers , patients with (rare)
MY SUCCESS STORY :
I try to be proud of every aspect of my live, that is my moto
MY FACTS :
• I’m a woman
• I live in Brussels
• I speak Dutch, French, English, German and some Spanish
• I’m interested in reading and writing, music
• I love singing
My expertise lies in both pharmacy and biochemistry. I began my career as a pharmacist and after completing further studies in biochemistry I started working at the University of Helsinki gaining my doctoral thesis in cancer biology there.
The driving force in my career has been the need and will to help people who have problems with their heath – especially people with cancer. I have worked for Colores, the Finnish Colorectal Cancer Association since 2017. In Colores we work for accessible information, support and best available, wholistic and human-centric cancer care for every patient. In my current position in Colores I gain fulfilment of my main passion: helping those whose lives have been affected by cancer.
Cristina Vacca graduated in Administration and Organization at La Sapienza University of Rome in 2014, she worked in Hospitality Management for over 5 years in London, than moved back to Italy as Clinical Data Manager at Gemelli Hospital in Rome. She is collaborating with Prof. Persiani and Dr. Lorenzon at EuropaColon Italia since Dicember 2020.
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.
Eva is also a member of the newly formed DiCE Patient Advisory Committee.
‘Norwegian by birth and Swedish by love’, she is a mother of two, and a grandmother of three. Her working life included two parallel jobs, a life-time occupation as a tour guide along with close to 30 years of strategic management in quality assurance in the aviation industry.
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”. You can hear her own account of this journey in this video interview.
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”.
F.Figen Ar, She is Chemical Engineer, Ph.D. She is energy and environmental consultant.
Despite being 60 years old, she has a very busy professional working life. In addition, she is a volunteer project developer and project manager of the Dance with Cancer Association since 2016. Also she is a board member of Dance with Cancer.
She is a survivor. She was diagnosed with cancer in 2014, but she did not receive chemotherapy or radiotherapy due to early detection. Despite this, she was cut off from life for 2 years. By participating in the group psychotherapy of Dance with Cancer, she returned to life and business life. Then also she started to work as a volunteer in Dance with Cancer.
In addition to Dance with Cancer, she also voluntarily develops projects to empower women living in rural areas, in economic and social life.
Neringa Čiakienė is director of Lithuanian Cancer Patient Coalition (POLA), which is the largest patient organization in Lithuania. Her areas of expertise include patient advocacy, public speaking, communication, fundraising, project management. She encountered patient advocacy 15 years ago when her young brother was diagnosed with oncological disease, 10 years ago started volunteering at POLA, later became a board member, and since 2019 is director of POLA. Her background lies in fundamental sciences and management, for about 20 years she worked as a middle-level manager in such state institutions as European Committee under the Government of Lithuanian, Prime Minister’s Office, Ministry of Foreign Affairs.
Vincent de Jong lives in The Netherlands and has a professional career in the Finance Industry as Risk Manager, Compliance Officer and Data Protection Officer.
Despite applying a healthy life style (non-smoking, non-drinking, non-overweight, vegetarian diet) he was diagnosed with two primary GI cancers in 2015 at the age of 42. Next to a low grade mucinous neoplasm of the appendix (LAMN) a highly aggressive stage IV CRC was found.
Despite a dismal outlook, two surgeries (including the challenging HIPEC) and 6 months of chemotherapy brought both diseases in full remission!
As coping strategy he is determined to learn as much about the disease as possible, but became frustrated with the information available in The Netherlands for patients. At entry level the data is quite good and easily accessible, but patients who want to learn more about things like genetics, complementary treatments or clinical trials have to resort to the pessimistic Dr. Google and the confusing nurse-practitioner Wikipedia.
He strongly believes that patient organizations and peer-to-peer networks (like the Facebook community “Colontown”) have a major role to play in educating and empowering patients.
He joined DiCE member organization Stichting Darmkanker Nederland in 2019 and has been involved with a number of DiCE projects.
He is co-author of a study evaluating a Dutch online tool for both physicians and stage IV CRC patients that aids the process of shared decision making, like the trade-off between quality of life and life expectancy. During the Update, will he tell you more about that project.
In 1992 I got a degree in Advertising from Centro Español de Nuevas Profesiones in Madrid.
Since then my professional career has gone through different labour sectors. I started by vocation, in the exciting world of advertising creation where I became a copywriter for several creative teams of different advertising agencies in Madrid.
In 1999 came up the opportunity to work in the aviation sector within the Madrid-Barajas International Airport where I performed as a flight coordinator and airport operations agent for more than a decade.
In 2013, the misfortune of a close relative suffering from colorectal cancer, made me know the third sector. Not for one minute did I think I would land on an NGO but sometimes things happen unexpectedly. There I felt I could support and be helpful to other people. Being sensitive, empathetic and supportive made the difference.
As current head of EuropaColon España I have focused on facilitating colorectal cancer patients any kind of service that the health system is not able to provide from psychological support to medical advice or adapted sport sessions.
Since we encourage patients to participate in shared decision-making along their doctor, it becomes crucial to provide them with high-quality information regarding their disease. Using a syllogism, If the information is power, a well-informed patient is an empowered patient.
Committed to the humanization of the doctor-patient relationship. Promoting the participation and prevention of CRC through population screening programs and pointing out those aspects of the National Health System that can be improved, such as reducing the time for access to innovative cancer treatment, are others of our lines of action.
Piero Rivizzigno, Laurea in Electronics Engineering at Padua University. Applied Mathematics and System Modelling academic research. Co-founder and President of Codice Viola, an Italian pancreatic cancer advocacy group committed to creating awareness and changing the status quo of pancreatic cancer treatments in the Italian healthcare system. Member of the scientific committee of the CECOG Pancreatic Cancer Conference, member of the Validation Group for the European Guidelines on Minimally Invasive Pancreatic Surgery, and member of the FAVO Lombardia Committee. Very keen on the transformational impact of digital technologies in the healthcare system.
Patricia is a volunteer, responsible for international communication and international projects in the platform “No to Cancer Slovakia”, established by nonprofit organization Europacolon Slovakia.
Patricia has been interested in the prevention of the disease since her studies of Public Health at Slovak Medical University in Bratislava. Starting an internal doctoral study program in 2011, she had an opportunity to gain experiences from research and having a family history of colorectal cancer, she has been highly motivated to join an organization supporting colorectal cancer patients in Slovakia in 2012.
After getting PhD. in Public Health, Patricia started carrier in the pharmaceutical industry as Clinical Planning & Analytics Manager. Supporting planning of clinical studies from various therapeutic areas, she experienced those countries with lower access to innovative treatments, even suffering from lack of clinical studies. Thanks to the experience with patient groups, Patricia believes that cooperation and continual effort can bring great progress in health care.
Lisa is a research scientist by training and since leaving the lab in 2002 has spent the last 19 years working for medical research charities on research strategy, science communications, marketing and communications and policy and influencing. She is 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 (formally Breast Cancer Campaign) and Bowel Cancer UK. For the past six years Lisa has been the Director of Research and External Affairs at Bowel Cancer UK, and oversees the charities research program, it’s marketing and communications function, and the policy and influencing activity. Lisa lives in London with her husband, Jonathan and daughter, Ellis and in her spare time is a big fan of LEGO and playing the clarinet.
