Preliminary Programme Saturday 11 October ELITE Palace Hotel
The Patient Forum with representatives from the Nordic countries, Europe and Ukraine.
08:00 Registration opens
08:00
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.
08:30 Welcome
08:30 – Gästrikesalen
Welcome by Penilla Gunther, Founder of FOKUS Patient and President, VIKING – The National Organisation for Heart-Lung transplanted patients.
Short presentation of all participants
Penilla Gunther
FOKUS Patient & Citizens Affairs
FOKUS Patient & Citizens Affairs
09:15 Introduction to the topics by the leaders of the workshops
09:15
Introduction to the topics by the leaders of the workshops (choice no.1 for participants) and then working in groups.
Workshop group leaders:
1. Sport and exercise – important for a healthy life
Anders Billström
Former Member of the Board of World Transplant Games Federation, now Member of WTGF Research Initiative (to co-ordinate and support reserach in the area of transplants, sports and health)
Former Member of the Board of World Transplant Games Federation, now Member of WTGF Research Initiative (to co-ordinate and support reserach in the area of transplants, sports and health)
2. Food and life style – new national recommendations
Ulla Evensson
Vice President, The Swedish Kidney Association
Vice President, The Swedish Kidney Association
3. How does a transplant effect studies and work life?
Mattias Barsk
Communication Manager, Hjärtebarnsfonden
Communication Manager, Hjärtebarnsfonden
4. Opportunities for patients, families and carers to make their voices heard
Tony Holm
President, The Swedish Cancer Coach Association & liver transplanted patient
President, The Swedish Cancer Coach Association & liver transplanted patient
5. What can be improved in healthcare for transplanted patients of all ages?
Anette von Koch
President LAM and Past President of VIKING – for Heart-Lung Transplanted, Sweden (SWEDISH)
President LAM and Past President of VIKING – for Heart-Lung Transplanted, Sweden (SWEDISH)
Paula Eronen
Syke Organisation – Peer Support for patients, Helsinki University Hospital, Finland
Syke Organisation – Peer Support for patients, Helsinki University Hospital, Finland
Harri Lammi
SYKE – for heart and lung transplanted patients (ENGLISH)
SYKE – for heart and lung transplanted patients (ENGLISH)
6. Innovative solutions in medtech and drugs
Björn Hellström
CEO Stratminds AB, former manager in different areas of the pharma industry
CEO Stratminds AB, former manager in different areas of the pharma industry
7. How can we help to improve the number of donors?
Gabriela Brandén
MOD – Mer organdonation
MOD – Mer organdonation
10:00 Workshops
10:00 Meeting rooms TBC
Workshops – Choice of topic no.1
1. Sport and exercise – important for a healthy life
2. Food and life style – new national recommendations
3. How does a transplant effect studies and work life?
4. The health insurance systems, how does it work for transplanted patients in different countries?
5. What can be improved in healthcare for transplanted patients of all ages?
6. Innovative solutions in medtech and drugs
7. How can we help to improve the number of donors?
10:15 Coffee break within the groups
10:15
Coffee break within the groups
11:15 Workshops
11:15 Meeting rooms TBC
Workshops – Choice of topic no.2
1. Sport and exercise – important for a healthy life
2. Food and life style – new national recommendations
3. How does a transplant effect studies and work life?
4. The health insurance systems, how does it work for transplanted patients in different countries?
5. What can be improved in healthcare for transplanted patients of all ages?
6. Innovative solutions in medtech and drugs
7. How can we help to improve the number of donors?
12:30 Lunch
12:30 – The Restaurant
Lunch
13:15 Presentation of the workshop’s results
13:15
Presentation of the workshop’s results. Proposals for actions and activities
Penilla Gunther
FOKUS Patient, together with the workshop leaders
FOKUS Patient, together with the workshop leaders
14:15 Break
14:15
Break
14:25 Panel discussion
14:25 Gästrikesalen
Panel discussion with representatives from Ukraine, Estonia and Norway.
Kristin Sims
Leader of the patient organisation Siirdatud Syda (Transplanted Hearts), Estonia
Leader of the patient organisation Siirdatud Syda (Transplanted Hearts), Estonia
Allan Sims
Leader of the patient organisation Siirdatud Syda (Transplanted Hearts), Estonia
Leader of the patient organisation Siirdatud Syda (Transplanted Hearts), Estonia
Iryna Rachynska
Advisor on communities and partnership development, Patients of Ukraine Foundation
Advisor on communities and partnership development, Patients of Ukraine Foundation
Dmitro Hluschko
Head of rhe patient organisation Pathways for Life, Ukraine
Head of rhe patient organisation Pathways for Life, Ukraine
Eileen Young Haga
President The Heart and Lung Transplanted Organisation, Norway
President The Heart and Lung Transplanted Organisation, Norway
Moderator: Penilla Gunther
15:00 ESOT Patient Inclusive Initiative
15:00
ESOT Patient Inclusive Initiative
ESOT works with transplant patient organisations throughout Europe to foster cooperation and dialogue between patients and healthcare professionals, to ensure patient representation and participation in ESOT activities, and to promote health and quality of life among the transplant population.
The activities aim to achieve these goals, and ESOT welcome the contribution and participation of all transplant professionals, patient organisation representatives, and individual patients and caregivers.
How can more patient organisations and networks contribute to the mission?
Colin White
National Advocacy & Projects Manager, The Irish Kidney Association, representing ESOT Patient Inclusive Initative
National Advocacy & Projects Manager, The Irish Kidney Association, representing ESOT Patient Inclusive Initative
15:30 Conclusions
15:30
Conclusions – proposals for next year’s Transplantation Forum
15:50 Thank you
15:50
Thank you
16:00 Coffee break
16:00 – The Restaurant
Coffee break
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