TURIN ONCA CONFERENCE 2024 From awareness to control

Kaisa Immonen

European Patient’s Forum (EPF) Director of Policy

Kaisa Immonen (MA) is Director of Policy at the European Patients’ Forum (EPF). She has a Master’s degree in International Relations (UK and Finland). She is responsible for the overall lead of EPF’s policy and advocacy work at EU level, strategic planning, policy analysis, and building positive relationships with EU institutions, international organisations such as the OECD, WHO and stakeholders. Her personal interests include patient empowerment and involvement in healthcare improvement, patient safety and quality of care, and health literacy.

She is currently co-chair of the European Medicines Agency’s Patients and Consumers Working Party since 2016. From October 2020 she is a patient representative on the EMA COVID-19 task force. She also represents EPF on the OECD’s health care quality and outcomes working party, an advisory group on PRIMS, the International patient advisory group for the OECD PaRIS initiative, and has been involved in CIOMS working group XI on patient involvement. In her personal capacity, she is a member of the BMJ Patient Panel and was involved in the ICHOM working group on general adult health.

Before joining EPF in 2010 she worked in EU health policy, advocacy and external communications roles in both the private and non-profit sectors.

Olle Ljungqvist

Chair of The European Nutrition for Health Alliance (ENHA)

Professor of Surgery Olle Ljungqvist MD, PhD received his medical degree and obtained his PhD on glucose metabolism in hemorrhage at the Karolinska Institutet in Sweden. He completed his residency and held several clinical positions in gastrointestinal surgery at the Karolinska Hospital and was appointed Professor of Surgery Nutrition and Metabolism in 2005 at the Karolinska Insitutet. He chaired the Center for Gastrointestinal Disease at Ersta hospital 1999-2008, Stockholm before taking up his current position as Professor of Surgery at Örebro University, Sweden in 2009. Dr Ljungqvist has served as Chair of the European Society for Clinical Nutrition (ESPEN), the International Association for Surgical Metabolism and Nutrition (IASMEN) as part of the International Surgical Society. He co-founded the Enhanced Recovery After Surgery (ERAS®) Society 2010 and serves as the Executive Chairman. He proposed the use of preoperative carbohydrates instead of overnight fasting for elective surgery, guideline recommend world-wide. His research interests are surgical stress, metabolism and nutrition and outcomes focusing on ERAS, publishing more than 300 original contributions, international guidelines, book chapters and reviews. He has co-edited several international textbooks on Clinical Nutrition and on ERAS. He is invited to deliver about 20 international main lectures worldwide annually.

Joost Wesseling

Executive Director ENHA

Joost Wesseling, MSc, is Executive Director of the European Nutrition for Health Alliance. Following his Masters in health science (Human Movement Sciences) and marketing training, Joost has held marketing and executive positions in both non-profit, as well as commercial organisations in health and healthcare. In recent years he worked on nutritional care implementation programmes through the European wide Optimal Nutritional Care for All campaign.

Cees Smit

Patient & Nutrition

Cees Smit (1951) studied business economics at the Free University in Amsterdam. He lives with severe haemophilia A and worked from 1987 till 1998 as co-ordinator of the Netherlands Haemophilia Society (NVHP). From 1998 till 2002, he worked in the mental health area. From 1978 till now, he has been a member of the research project ‘Haemophilia in The Netherlands’ at the Leiden University Medical Centre (LUMC).
In January 2003 he received an honorary doctorate from the college of deans of the University of Amsterdam in recognition for his work on patient participation, haemophilia and medical biotechnology.
At ZonMw (The Netherlands Organisation for Health Research and Development) he is a member of the Commission for Translational Gene Therapy and Stem Cell Therapy) and he is chair of the Policy Board of the Biobank of Radboud UMCN.
In recent years, he wrote two books on the position of the patient movement in the total health care system in The Netherlands, jointly with Annemarie de Knecht – van Eekelen. One of the issues discussed in these books is the increasing cooperation between patients, researchers and industry in the drug development process (Patient 3.0). Therefore, they wrote several books on ageing with chronic diseases, like haemophilia and hiv.

Dušan Baraga

MD, Family doctor & Patient 

Dusan Baraga studied medicine and now works as a family doctor. For almost 20 years working for the IBD patient association as a scientific advisor and last years as vice-president also. He cares for patients’ education and the organization of seminars for doctors about IBD. Since 2018 he is a member of the ONCA group from Slovenia. He also contributes to education for medical doctors about the importance of clinical nutrition for all chronic patients. He is also involved in the project to involve clinical nutrition in the primary health system.

Marzena Nelken

EPF Board, Project Manager Federation of Polish Patients

Marzena Nelken is a board member of the Polish PKU and RD Association Ars Vivendi. She has been working with children, their families and older people with phenylketonuria and other inherited metabolic diseases for over 18 years now, starting as a volunteer. She is experienced in organising events like trainings, workshops, conferences and holidays for children and families. In the Federation of Polish Patients – the umbrella organisation with almost 100 patient organisations –, she supervises projects working on both national and international levels.

Currently, Marzena is coordinating public dialog between Polish Ministry of Health, Government, and patients’ community in Poland. The project is being carried out all over the country, in all regions. Marzena is also involved in the EUPATI project in Poland and has coordinated all the meetings of the Polish EUPATI National Platform. Moreover, she is a student of the EUPATI academy in 3rd Cohort on clinical trials. Marzena has translated many booklets and information, mostly on rare diseases, so patients in Poland have the most updated knowledge about their disease. She worked with doctors, lawyers, psychologists, and dieticians to publish handbooks for patients.

She is a great advocate for patients as she has always had direct contact with them and knows patients’ problems first-hand.

Ronit Endevelt

Director nutrition division, Israeli Ministry of Health

Ronit Endevelt is a professor for nutrition and nutrition policy, is working as the director of the nutritional division at the ministry of health, and as a researcher and lecturer at the school of public health at the University of Haifa.

Ronit promotes many nutritional regulations in order to improve the food architecture in Israel, to promote healthier nutrition for all, and to eliminate malnutrition and food insecurity in Israel.