No more Melanoma deaths in Europe. Access to prevention, early detection and effective treatment for everyone.
Melanoma Patient Network Europe
“The future is not shaped by people who don’t really believe in the future. It is created by highly motivated people, by enthusiasts, by men and women who want something very much or believe very much.” John Gardner
A chance to live for all, not a privilege for few.
23rd- 25th June 2017
Melanoma patients in Central and Eastern Europe face particular challenges concerning the detection and treatment of Melanoma.
We in MPNE consider it unacceptable that survival chances of Melanoma patients differ to such a degree within Europe.
MPNCEE2017 is therefore a conference
under construction- please come again to check for up-dates!
Friday, 23rd June
Learn from a true expert what dermoscopy is and how it works.
Requires special registration and please plan your travel accordingly
Conference Opening Session
Welcome to Zagreb
Introduction to the conference
Bettina Ryll, MPNE
MPNCEE- Melanoma in Central and Eastern Europe
Violeta Astratinei, MPNE
Introduction to Melanoma
Skin melanoma: disease and evolution
Melanoma therapies- state of the art versus availability
Piotr Rutkowski, Poland
Time for questions
MEET YOUR COLLEAGUES
Reception and Poster Competition
further details to come
Dinner speech- Fredrik Östman, Sweden
Saturday, 24th June
Session 1. Prevention is the best cure. Early detection in Melanoma
1.1 The need for prevention- prevention spares patients enormous suffering and is both cost- effective as well as potentially cost-saving. Speaker TBC
1.2. Challenges in Prevention & Early detection with examples of successful early detection actions in CEE
Zrinjka Pastar, Croatia
1.3. Vitamin D - a new intervention?
Ana Ljevar, Croatia
1.4 “All.Can: improving the efficiency and stability of cancer care – recommendations for Poland” Szymon Chrostowski, Poland tbc
10.30-11.00 Coffee break
When survival depends on access to life-saving innovation.
Session 2. Understanding the problem
2.1. The fight for access to effective medicines in Melanoma - a CEE patient experience Sretena Njegovanovic, Serbia
2.2. Improving care through Melanoma/ cancer registries- the Croatian example.
2.3. Mapping disparities in Melanoma
Lidjia Sekulovic, Serbia tbc
2.4. Benchmarking/ indicators to monitor progress in access
Ana-Maria Forsea, Romania
More than 5000 patients with metastatic melanoma in Europe per year do not have access to recommended first-line innovative treatments- http://www.ejcancer.com/article/S0959-8049(17)30069-2/abstract
Video on access to Melanoma drugs
Session 3: Health economics in CEE
Central and Eastern Europe faces particular challenges when it comes to the financing health care. This session will provide an introduction, perspectives from Health Technology Assessment bodies and insurers and address specific challenges of the region.
3.1 Health economics in CEE
Zoltan Kalo, Hungary tbc
3.2 HTA & reimbursement in the CEE region
Vlad Mixich, Romania tbc
3.3 Health Insurance in Croatia– study case CHIF
Veronika Lausin, Croatia tbc
3.4 Differential pricing, parallel trade and crisis of medicines in the region
Ivana Bajo, Croatia tbc
3.5 Questions and discussion
Interactive map about the burden of non-communicable disease, including cancer, demonstrating the high need for functioning healthcare systems in CEE:
Please note that as always, the reliability of the data depends on the quality of the underlying data sources such as registries!
15.30-16.00 Coffee break
16.00 - 17.30
Session 4. Policy and action for better access to medicines in Melanoma
The political environment influences access to innovative therapies. How can policy and advocacy action help to gain access for desperate patients in diseases like Melanoma?
4.1. ESMO EU policy initiatives for access to expensive medicines
4.2.Bulgarian- Romanian agreement on joint procurement of expensive medicines
Vlad Voiculescu, Romania
4.3 Generating evidence to support policy decision making.
4.4 Advocating for access
Tamas Berekzky, EATG, Hungary
4.5 Questions and discussion
Session 5. Living well with Melanoma
Fortunately for us, the number of Melanoma survivors is constantly rising, also in CEE. Good management of side effects, attention to overall Quality of Life and the necessary support therefore become important that Melanoma patients not only live, but also live well.
3.1. Reporting side-effects- what can we learn from direct patient reports?
speaker from Halmed, Croatia tbc
3.2. Ensuring Quality of Life on new therapies - managing side effects
John Haanen, NKI, NL tbc
3.3. Social support and palliative care
Nikolina Nizic, Croatia
21.00 Conference Dinner
Sunday, 25th June
Session 5. Accessing clinical trials in Melanoma
Clinical trials are a way for Melanoma patients to access new medicines otherwise not available to them. This session will look at the challenges of accessing clinical trials abroad, but also at home- and why clinical trials are of interest not only to patients but also to entire economies.
5.1. Joining clinical trials abroad- a carer perspective
Mikhail Odit, Russia tbc
5.2. Accepting patients from abroad into clinical trials
Antonella Romanini, Italy tbc
5.3. Running a clinical trial in Romania
Michael Schenker, Romania tbc
5.4. How to attract more clinical trials to the region
Piotr Rutkowski, Poland tbc
Benefit of clinical trials to society:
10.30- 11.00 Coffee break
Session 6. Advocacy & Capacity building
Patients increasingly demand participation in healthcare-decision making, also in CEE. The impact depends on the level of knowledge, making capacity- building a top priority. Can programs used in other parts of the EU simply be transferred or do they need adaptation for the region? If yes, in which sense?
6.1. Patient involvement in the healthcare decision
Sarunas Narbutas, POLA, Lithuania tbc
6.2. Introduction to advocacy/ capacity building
Violeta Astratinei, MPNE and Melanom Romania
6.4. New models in the management of patient organisations
Jan Geißler, CML advocates, Germany tbc
Summary and conference closure
13.00 Lunch and departure
Looking forward to seeing you all in Zagreb!
conference language is English
Who should apply?
Melanoma patients, carers and advocates, in particular from Central and Eastern Europe, but anyone with interest in the region.
Please note that attendance is upon application only.
Not a Melanoma advocate but still interested to attend? Please contact us
What does it cost?
Accepted advocated will receive free registration and accommodation for 2 nights at the conference venue. Extra nights are at participants' own expenses.
Travel needs to be arranged for by participants themselves but will be reimbursed up to a maximum amount of € for economy/ 2nd class travel after full attendance of the conference.
Please look for the best deals and keep the original receipts of your bookings.
Don't want to travel alone? Use the MPNE facebook group to find fellow travellers!
Cannot afford to pay ticket upfront? Please contact us.