The challenges for healthcare and the life science industry are huge. How to handle the major causes for severe diseases and to reduce the number of deaths within the area of Communicable Diseases like virus and bacterises, which is really something that affect us all in our daily life? And Non-Communicable Diseases where cancer and cardiovascular diseases reaps a large number of lives every year together with connected diagnoses?
These areas are prioritized by WHO, UN and EU – so how do we deal with them in Sweden, and not the least the NCDs? The number of elderly is growing and with that, the comorbidities where we need to understand more about the connections between them. How can we increase knowledge, keep the trust for science and society and at the same time stimulate innovations in healthcare for the benefit of the patients?
Welcome to two interesting days with Swedish and International speakers and where you as a delegate also play and important role to the programme!
Day 2 will have a special focus on the connections between chronic diseases and conditions where there are a huge need of support and understanding to handle the life situation with medications, treatments and still remain a good quality of life. Can we change the way we think about healthcare and actually use new tools availabe in better ways?
Programme – 18 March
08:30
Registration opens
Welcome to our registration desk when you arrive at ELITE Palace Hotel.
Please bring your e-mail confirmation for your participation.
You are required to wear your conference badge all day for security purposes.
09:00 – Vanadissalen / Vasasalen
Welcome

Founder FOKUS Patient®
Penilla Gunther is a former Member of Swedish Parliament and founder of the initiative FOKUS Patient®, President of the European Patient Safety Foundation and a member of the Steering Committee för The Heart Failure Policy Network since 2015. Gunther was appointed by the European Commission 2022 as Member of the Cancer Mission Board for implementing goals from the Europe’s Beating Cancer Plan together with the Horizon Programme.
As both a former policymaker at all levels, and with a life-long patient experience, Gunther has got an overarching knowledge of healthcare systems, life science and is involved in several areas where especially can be mentioned patient’s rights, CVDs, transplantation & organ donation, and cancer.
Present situation on cardiovascular diseases in Europe and the need of a CVD Health Plan
09:05 – Vanadissalen / Vasasalen
“Present situation on cardiovascular diseases in Europe and the need of a CVD Health Plan”

President Elect the European Society of Cardiology 2024-2026. Professor of Cardiology at Karolinska Institutet.
Cecilia Linde is a cardiologist with research currently focused on devices and their implementation and epidemiology in heart failure. Linde is Vice President of the Board and has been a member of a number of ESCs working groups and councils since 1998.
Has the Europe´s Beating Cancer Plan helped to improve Patient’s outcome?
09:15 – Vanadissalen / Vasasalen
“Has the Europe´s Beating Cancer Plan helped to improve Patient’s outcome?”

President European Cancer Organisation, Professor with habilitation and a researcher at the Babes-Bolyai University, Faculty of Sociology and Social Work in Cluj Napoca, Romania
Csaba Dégi is a leading figure in the field of psycho-oncology since 2001. He is the Executive Secretary of the International Psycho-Oncology Society (IPOS) and a past member of the Board of Directors. As the President of the European Cancer Organisation (ECO) in Brussels, Degi is advocating for psychosocial oncology care across Europe and beyond. Dr. Dégi is also the founder and president of the Romanian Association for Services and Communication in Oncology (APSCO), and a collaborating partner of the Innovative Partnership for Action Against Cancer initiative in Europe. In 2016, the Romanian Ministry of Health appointed him as a single member of the Committee for Social Work and Support in Oncology.
09:25 – Vanadissalen / Vasasalen
Panel Discussion
The discussion will be about how the Europe’s Beating Cancer Plan can be used to create a European CVD Health plan and how this could contribute to a better and more combined efforts for people with connected diagnoses, support systems, but also preventive measures and provide a higher quality of life.

CEO, Global Heart Hub – the world’s biggest patient network for cardiovascular diseases, Ireland
Neil Johnson holds a master’s degree in psychology; is an Honorary Clinical Fellow of the School of Medicine, University of Galway, Ireland; and in 2023, University of Galway awarded Neil an Honorary Doctorate in Laws (LLD) in recognition of his work in cardiovascular health and patient advocacy. Johnson was Chief Executive of the Irish Heart & Stroke organisation, Croí from 1992–2023 and the Irish National Institute for Prevention and Cardiovascular Health from 2014–2023.

President Elect the European Society of Cardiology 2024-2026. Professor of Cardiology at Karolinska Institutet.
Cecilia Linde is a cardiologist with research currently focused on devices and their implementation and epidemiology in heart failure. Linde is Vice President of the Board and has been a member of a number of ESCs working groups and councils since 1998.

President European Cancer Organisation, Professor, Habilitation and researcher at the Babes-Bolyai University, Cluj Napoca, Romania
Csaba Dégi is a leading figure in the field of psycho-oncology since 2001. He is the Executive Secretary of the International Psycho-Oncology Society (IPOS) and a past member of the Board of Directors. As the President of the European Cancer Organisation (ECO) in Brussels, Degi is advocating for psychosocial oncology care across Europe and beyond. Dr. Dégi is also the founder and president of the Romanian Association for Services and Communication in Oncology (APSCO), and a collaborating partner of the Innovative Partnership for Action Against Cancer initiative in Europe. In 2016, the Romanian Ministry of Health appointed him as a single member of the Committee for Social Work and Support in Oncology.

Senior expert, research at The Swedish Childhood Cancer Fund, Member of the Committee for Advanced Therapies (patient representative), EMA – European Medicines Agency

Member EU Cancer Mission Board, Member HFPN – Heart Failure Policy Network, Founder FOKUS Patient
The Importance of Embedding and Empowering Lived Experience into the landscape of Rare Diseases
10:10 – Vanadissalen / Vasasalen
“The Importance of Embedding and Empowering Lived Experience into the landscape of Rare Diseases”

President and CEO, The Ehlers-Danlos Society, UK, Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration (Penn State College of Medicine), Vice President, IAPO – International Alliance of Patients Organizations
A National Strategy on Rare Diseases
10:25 – Vanadissalen / Vasasalen
“A National Strategy on Rare Diseases”
Presentation by Lena Lövqvist, Investigator National Board on Health and Welfare for the Government about a National Strategy on Rare Diseases.

Member of the Board, European Reference Networks (ERN), Project leader Joint Action JARDIN
10:40 – Restaurant
Break
Coffee or tea
1) Common and uncommon in diabetes and kidney diseases
2) CVDs, Connected diagnoses and its effect on the individual and society
3) Meeting with The National Ehlers-Danlos Syndrome Association, Sweden
11:00
Parallel seminars
Vanadissalen
COMMON AND UNCOMMON IN DIABETES AND KIDNEY DISEASES
Diabetes and kidney diseases might not be rare, but there are some that is, like vasculitis diseases that belongs to ANCA-associated vasculitis that affect de smallest blood vessels in the body and gives symptoms from many different organs like eyes, lungs and kidneys. To have one of these diagnoses demands access to good treatments of course, but the combination of several diagnoses raises also demands for new types of drugs that can improve quality of life. One connected condition e.g. that might not be mentioned so often, is the fact that there can be vision loss too.

President, Diabetes Sverige, Sweden

President, The Kidney Association, Sweden, Board Member, European Kidney Patients Federation

Professor, Senior Consultant, Linköping University Hospital and visiting professor, Karolinska Institute

Project leader, FOKUS Eye-Health

Experienced Leader in Life Science
Vasasalen
CVD’S, CONNECTED DIAGNOSES AND ITS EFFECT ON THE INDIVIDUAL AND SOCIETY
This seminar covers CVDs and connected diagnoses, the effect on the individuals as well as for the society. How can we provide better prevention and treatments, can a European or National Cardiovascular Health Plan improve the ongoing work?
But also about the management of medication, needs of informaiton and knowledge for people with chronic conditions to avoid relapse and new diagnoses.

President-Elect European Society of Cardiology, Professor Head of Cardiology, Karolinska University Hospital

Managing Director, Health Policy Network Partnership, Heart Failure Policy Network, UK

M.D., Ph.D., Adjunct Senior Lecturer & Associate Professor & Senior consultant in Oncology, Karolinska Universitetssjukhuset, Sweden

Policy Director at Kidney Care UK, representing the Global Patient Alliance for Kidney Health

President, Swedish National Heart-Lung Association

Co-founder FOKUS Patient, Life Science consultant
Meeting room Gästrikesalen
MEETING WITH THE NATIONAL EHLERS-DANLOS SYNDROME ASSOCIATION, SWEDEN
HSD AND hEDS – UNDERDIAGNOSED, UNTREATED AND MISUNDERSTOOD
EDS (Ehlers-Danlos syndrom) and HSD (Hypermobility spectrum disorder) are a group of genetic connective tissue disorders. Some types of EDS are rare or ultra rare while the hypermobile type (hEDS) as well as HSD are common and over 300 000 Swedes could be affected. Connective tissue is present in all parts of the human body which causes a variety of complex symptoms. At the same time, these diagnoses cannot be found under the present headlines in the Swedish health-care system. Thus, there are no specialists or clinics for this large group of patients. This, in turn, causes a lack of knowledge among medical staff, a lack of proper response and treatment, and an unacceptable level of suffering among the patients.

President and CEO, The Ehlers-Danlos Society, UK, Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration (Penn State College of Medicine), Vice President, IAPO – International Alliance of Patients Organizations.

Specialist Physiotherapist with a PhD in Physiotherapy at Queen Silvia Children’s Hospital, Member of the Swedish Specialist Network for HSD/hEDS, Member of The EDS Society’s Scientific Committee.

Director, The Swedish National Ehlers-Danlos Association.
11:50 – Restaurant
Break
1) Neurological conditions connected to each other and to others
2) Cancer, Heart and the Immune System
12:00
Parallel seminars
Vanadissalen
NEUROLOGICAL CONDITIONS CONNECTED TO EACH OTHER AND TO OTHERS
This seminar we talk about different neurological conditions and how they appear. Other connected diagnoses like CVD’s, diabetes or after a transplantation, can affect these conditions and more information is needed on symptoms and what kind of treatments there are available.

Professor, Senior Consultant and Head of Centre on High Specialized Epilepsy Care, Gothenburg, Sweden

Co-Director, International Brain Tumour Alliance (IBTA) UK

Head of Research and Society, Swedish Brain Foundation

Editor-in-Chief, Magazine Neurology in Sweden
Vasasalen
CANCER, HEART AND THE IMMUNE SYSTEM
This seminar will talk about the connections between cancer, cardiovascular diseases an how the immune system and other related conditions affect each other. Cardio-onkology is one example of the need of more multiprofessional doctors and nurses when comorbidites are increasing. Stem cell transplantation is a treatment for a number of conditions and very much concerns the immune system.

M.D., Ph.D., Adjunct Senior Lecturer & Associate Professor & Senior consultant in Oncology, Karolinska Universitetssjukhuset, Sweden

Professor of Molecular Immunology at Karolinska Institute

Secretary General, The Cancer- and Allergy Foundation, Sweden

President, Blood Cancer Forum, Sweden, President, Myeloma Patients Europe
12:50 – Restaurant
Lunch
More info here…
12:50 – Gästrikesalen
An opportunity to discuss Rare Diseases with Lara Bloom

President and CEO, The Ehlers-Danlos Society, UK, Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration (Penn State College of Medicine), Vice President, IAPO – International Alliance of Patients Organizations
1) Cancer - Detection, Diagnostics and Treatments
2) Specialized support for chronic NCD’s
3) Meeting with The Swedish Society of Hypertrophic Cardiomyopathy
13:50
Parallel seminars
Vanadissalen
CANCER – DETECTION, DIAGNOSTICS AND TREATMENTS
This seminar will talk about how to use a patient-centered care from the start of a cancer journey with the detection, new ways for diagnostics and how to treat cancer not only for the future – but now!
A million facts about your cancer can be found trough transitioning a simple test to a datadriven medicine with help of sequensing. How can it be used in a broader scale? A view from Europe to Sweden and from Sweden to Europe about what’s going on.

Principal lecturer and research group leader (Turku UAS), President European Oncology Nursing Society, post doc researcher (Uni Turku), Finland

Medical Lead Precision Oncology, CCC München – Comprehensive Cancer Center & Chair: Translational Research and Precision Medicine Working Group ESMO – European Society for Medical Oncology, Germany

NGS BioInformatics Developer, NEOGAP Therapeutics AB, Senior Data Scientist, Sweden

Policy Officer, The Swedish Patient Association for Breast Cancer

Editor-in-Chief, Magazine Oncology in Sweden
Vasasalen
SPECIALIZED SUPPORT FOR CHRONIC NCD’S
It’s not only medical specialists in the different therapeutic areas that are needed, but also other kind of HCPs. They can unburden and complete the specialist healthcare with their knowledge, like e.g. physiotherapy for patients with respiratory diseases or psycho-oncology for cancer patients? What can contribute to a quality of life for patients with chronic or long-term conditions?

Associated Professor in Specialized Care in Psycho-Oncology, Sweden

Professor in Physiotherapy at the Department of Community Medicine and Rehabilitation, Umeå University

Nutritionist and Public health scientist

President The Patient Association for Intregrative Medicine, Expert Patient in Rehabilitation and Integrative Medicine

President, Blood Cancer Forum, Sweden, President, Myeloma Patients Europe
Meeting room Gästrikesalen
MEETING WITH THE SWEDISH SOCIETY OF HYPERTROPHIC CARDIOMYOPATHY AND LISA SALBERG, HMCA, USA

HCMA, USA
14:40 – Restaurant
Break
1) Metabolic Diseases - Connection and Preventive Options
2) Quality of Life - How to Measure..?3) Meeting with The Swedish Society of Hypertrophic Cardiomyopathy
14:50
Parallel seminars
Vanadissalen
METABOLIC DISEASES – CONNECTIONS AND PREVENTIVE OPTIONS
Obesity is the most important risk factor for the metabolic syndrome type 2 diabetes. Each one of the components in the metabolic syndrome increases the risk for cardiovascular diseases. When the diagnose is the metabolic syndrome, is the risk for a myocardial infection 5 times more than for the average person. If the function of the liver deteriorates, the occurrence of diabetes will increase, and a clinical diabetes will be seen as a marker of liver failure. How can vi increase knowledge of the connections of these diagnoses and is it possible to prevent them?

CEO, World Obesity Federation & Global Health Leader in NCDs, Policy & Communications and Organizational Change, UK

Professor, Senior Consultant, Director of Research & Development, Education and Innovation, Karolinska Institute and Karolinska University Hospital, Sweden

President, The New National Association for Hepatitis C, Sweden. Vice-President ELPA – European Liver Patients Association

Experienced leader in Life Science
Vasasalen
QUALITY OF LIFE – HOW TO MEASURE..?
If you have a long-term treatment, a life-long condition or a chronic disease it might be even more important to find what brings meaning and happiness into your life? How much do the surrounding environment or your possibility to make your voice heard in healthcare, play a role for your well-being?

Health Economist, Department of Epidemiology and Global Health Umeå University

Policy Expert, The Swedish Cancer Society

Policy analyst, Health Division OECD Patient-reported outcomes

Secretary General, Leading Healthcare
Meeting room Gästrikesalen
MEETING WITH THE SWEDISH SOCIETY OF HYPERTROPHIC CARDIOMYOPATHY AND LISA SALBERG, HMCA, USA

HCMA, USA
15:40 – Restaurant
Break
Coffee or tea
A healthcare system and life science industry for the future
16:00 – Vanadissalen / Vasasalen
Panel Discussion: “A healthcare system and life science industry for the future”
Will healthcare be more patient-centered and more inclusive with the help of new drugs and medtech, European Health Data Spare with the patient record in our mobile phones, and the use of AI will increase…? And what kind of values will there be as a foundation for all these measures?

Executive Director Strategy and Healthcare Systems på EFPIA

Senior Advisor on core policies in the EU, President European Association of Value-Based Health Care

Senior Director Corporate Affairs, AstraZeneca

Professor in Oncology, Lund University, Special investigator for a revised National Cancer Strategy and Sr Consultant, Skåne University Hospital

Secretary General Leading Healthcare
16:55 – Vanadissalen / Vasasalen
Thank you

…
17:00 – Vanadissalen / Vasasalen
Ending
FOKUS PATIENT
The digital and physical meeting place FOKUS Patient is an initiative and brand of Citizens Affairs AB. FOKUS Patient was founded in 2019 to gather and create networks between all stakeholders in healthcare and life science – with a patient perspective. We collaborate with all actors; patient and industry associations, pharmaceutical and medtech companies, authorities, academia and healthcare, and more.
If you want to know more, see our website www.fokuspatient.se
INFO
CONTACT
Sponsorship & practical issues:
e: mattias@citizensaffairs.se
p: +46704438951
Program and content:
e: penilla@citizensaffairs.se
t: +46708736344