No more Melanoma deaths in Europe. Access to prevention, early detection and effective treatment for everyone.

Melanoma Patient Network Europe

Living wellwith

Melanoma.

Walk the talk.

Program

Last update 19th June 2017 BR


MPNCEE 2017


Melanoma

in  Central and Eastern EuropE

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

23rd- 25th June 2017

​​Hotel Dubrovnik, Gajeva ul.1, 10000 Zagreb, Croatia

When survival depends on access 
to life-saving innovation

Prevention is the best cure. Early detection in Melanoma.

PROGRAM

Version 18th June 2017


Friday, 23rd June

Afternoon

Opportunity- extra sign-up required
14.00- 15.00 
Introduction to Dermoscopy

Zrinjka Pastar



Conference Opening Session
16.00- 16.30
Welcome to Zagreb

Zrinjka Pastar, Croatia
Introduction to the conference

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

Violeta Astratinei, MPNE


16.30 -18.30

Melanoma QuickStart

An introduction to our network and Melanoma in general. 


  • Introduction to the Melanoma Patient Network Europe Bettina Ryll, MPNE founder

​    How we got to where we are and how we work: Evidence-based advocacy and MPNE principles


  • Melanoma Essentials Antonella Romanini, Italy 
  • Introduction to Melanoma therapies Bettina Ryll, Sweden
  • Panel discussion: accessing Melanoma treatments abroad Lucian Stanciu, Romania and Conference participants with personal experience 
  • ASCO2017 update 

Bettina Ryll, MPNE

  • MPNErare Iain Galloway


Time for questions


18.30- 19.00

A Melanoma life well-lived.
Fredrik Östman, Sweden


19.15- 20.00
MEET YOUR COLLEAGUES
Reception

20.00 Welcome Dinner



Saturday, 24th June 

9.00- 10.30

Session 1   Understanding the problem: accessing life-saving medicines in Melanoma


1.1 The fight for access to effective medicines in Melanoma - the CEE experience

Violeta Astratinei, MPNE
1.2 Treating Melanoma patients from abroad. 

Antonella Romanini, Italy
1.3 Mapping disparities in Melanoma in Europe

Lidjia Sekulovic, Serbia 
1.4 Benchmarking/ indicators to monitor progress in access

Ana-Maria Forsea, Romania

Further reading


Melanoma in CEE


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 

10.30-11.00 Coffee break


11.00-
12.30
Session 2   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 on how to first measure the burden of cancer, how to evaluate the benefit of potential new therapies by Health Technology Assessment bodies and insurers and address specific challenges of the region.

2.1 The crisis of cancer medicines in the region.

Vlad Voiculescu, former Minster of Health, Romania 

2.2 EUnetHTA and CEE
Mirjana Huić​, EUnetHTA and Agency for Quality and Accreditation in Health Care and Social Welfare, Croatia
2.3 Health Technology Assessment- the Romanian experience 

Vlad Mixich, former Health Ministry, Romania 

2.4 The value of early detection. 

Early detection spares patients enormous suffering and is both cost- effective as well as potentially cost-saving. Piotr Rutkowski, Warsaw, Poland


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!

Cancer Registries- what makes a good Cancer Registry? Basic principles, recommendations and quality measures from a training course of the European Network of Cancer Registries:

http://encr.eu/index.php/activities/courses 


12.30- 14.00 Lunch

14.00- 15.30
Session 3  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?

3.1  Treating Melanoma patients with innovative medicines in CEE.

Piotr Rutkowski, Warsaw, Poland
3.2  Action for Access to effective cancer therapies.  

Vlad Voiculescu, former Minster of Health, Romania 
3.3  Advocating for access

Tamas Berekzky, EATG, Hungary
3.4 Credibility in patient advocacy

Sarunas Narbutas, POLA, Lithuania


Further reading
Benefit of clinical trials to society

15.30- 16.00 Coffee break



16.00- 19.00

Workshop

Successfully advocating for patients in Central and Eastern Europe.

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?


Tamas Bereczky, EATG, Hungary
Sarunas Narbutas, POLA, Lithuania


20.30 Conference Dinner


Sunday, 25th June 
please do not forget to check out from the hotel!

 

9.00 -10.30
Session 4 Prevention is the best cure. Early detection in Melanoma

No one chooses a Melanoma diagnosis. So what can we do to prevent and failing that, detect it as early as possible? And how can we ensure our healthcare systems are effective enough to deliver that type of prevention? 


4.1 Challenges in Prevention & Early detection with examples of successful early detection actions in CEE 
Zrinjka Pastar, Croatia
4.2 Vitamin D - a new intervention? 
Ana Ljevar, Croatia
4.3  ‘You can’t escape your skin. Get it checked!’ This 2017 Macedonian campaign.

Biba Dodeva, Borka, Macedonia

4.4  Group discussion 

How do we know that our campaigns are successful?


10.30- 11.00 Coffee break

11.00- 12.30
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.

5.1 What patient forums tell us- quality of life, side effects and how to cope with Melanoma.
​Bettina Ryll and Violeta Astratinei, MPNE
5.2 Reporting side-effects- what can we learn from direct patient reports?  
Adriana Andrić from Halmed, Croatia 

5.3 Social support and palliative care 
Nikolina Nizic, Croatia

5.4 Group discussion 

What can we as network do to ensure Melanoma patients live well?


12.30- 13.00

Summary and conference closure
Zrinjka Pastar and Bettina Ryll


13.00 Lunch and departure


Looking forward to seeing you all in Zagreb!

Bettina, Violeta and Zrinjka

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