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


MPNCEE 2017


Melanoma

in Central and Eastern EuropE

A chance to live for all, not a privilege for few.


MPNCEE 2017 

23rd- 25th June 2017

Zagreb, Croatia


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


  • with particular attention to the challenges that Melanoma patients living in Central and Eastern Europe face
  • looking for constructive solutions for CEE patients.



PROGRAM

under construction- please come again to check for up-dates!


Friday, 23rd June

Afternoon

Opportunity
Learn from a true expert what dermoscopy is and how it works.
Requires special registration and please plan your travel accordingly


Conference Opening Session
16.00- 16.30
Welcome to Zagreb

Zrinjka Pastar
Introduction to the conference

Bettina Ryll, MPNE
MPNCEE- Melanoma in Central and Eastern Europe

Violeta Astratinei, MPNE


16.30 -18.30
Introduction to Melanoma

Skin melanoma: disease and evolution

speaker tbc
Melanoma therapies- state of the art versus availability

Piotr Rutkowski, Poland
ASCO2017 update 

Bettina Ryll
Time for questions

18.30- 19.30
MEET YOUR COLLEAGUES
Reception and Poster Competition
further details to come


20.00 Dinner
Dinner speech- Fredrik Östman, Sweden



Saturday, 24th June 

9.00 -10.30
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

Further reading
http://www.all-can.org/national-initiative/country-level-can-poland

10.30-11.00 Coffee break

When survival depends on access to life-saving innovation.
11.00-12.30
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.

speaker tbc
2.3. Mapping disparities in Melanoma

Lidjia Sekulovic, Serbia tbc
2.4. Benchmarking/ indicators to monitor progress in access

Ana-Maria Forsea, Romania

Further reading

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 

Lunch 12.30-14.00

14.00- 15.30
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

Further reading
Interactive map about the burden of non-communicable disease, including cancer, demonstrating the high need for functioning healthcare systems in CEE:
https://public.tableau.com/profile/willistowerswatson#!/vizhome/GlobalBurdenofNon-communicableDisease/GBD2015_1
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

speaker tbc
4.2.Bulgarian- Romanian agreement on joint procurement of expensive medicines

Vlad Voiculescu, Romania
4.3 Generating evidence to support policy decision making.

Speaker tbc
4.4 Advocating for access

Tamas Berekzky, EATG, Hungary
4.5 Questions and discussion

17.30- 18.30 
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 


9.00 -10.30
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

Further reading
Benefit of clinical trials to society:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4228288/

10.30- 11.00 Coffee break

11.00- 12.45
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

EPF program/ PACT- Stanimir Hasurdjiev/ Bulgaria tbc
6.3. Education for Melanoma patient advocates- particularities in CEE

Violeta Astratinei, MPNE and Melanom Romania
6.4. New models in the management of patient organisations

Jan Geißler, CML advocates, Germany tbc

6.5 Discussion

Summary and conference closure

13.00 Lunch and departure


Looking forward to seeing you all in Zagreb!

​​



Attendance of the MPNCEE 2017 conference

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.
​​